Monday, April 21, 2014

Tuesday, October 14, 2008 imckelvin, Community Member, asks

Q: What are the last stage of MS?

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Answers (20)
Lisa Emrich, Health Guide
10/14/08 2:32pm

Hi there,

 

Welcome and thanks for the question.  This is a question which has been asked before and for which there is not an easy answer.

 

Do you want to know more about the various categories of MS progression?  or Do you want to know what happens more at end-of-life for a patient?

 

Multiple sclerosis itself is not considered a fatal disease, but it can cause complications.

 

Before saying any more, could you clarify a bit what kind of information you are seeking please?

 

lisa

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Maisie, Community Member
8/18/09 2:10pm

Hi, I want to know what I am facing.I have had m.s. since I was 27 I am now 58 and because of a few very stressful years I have secondary progressive m.s.My neurologist informed me 2yrs. ago Iwas in the last stages of the disease and I was obviously loosing the battle.I  have not been back since.I am married and have two adult sons.My husband is my only carer and I want to know what the last stages are.

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Dorrain, Community Member
7/26/11 5:40pm

Ms put holes in your spinal column and sensors of the brain

The person cannot move any of there limbs, have a hard swallowing food and water. The cannot have a conversation, because liquid sit on their voice box.The have to be suction. Because, they cannot move that get pnemonia, and UTI a lot.

Eventually, the body get to weak to fight off infections.

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Vicki, Community Member
1/26/13 10:57am

My mother just died with MS at the age of 66. She lost all control of bodily functions. Had a UTI that couldn't go away cause she couldn't swallow good enough to keep enough fluids in her body. She refused feeding tube. She couldn't talk and what she was thinking in her brain wasn't coming out her mouth properly. She had a very bad pressure sore that also wouldn't heal. If you are the one that wrote the question..then you are not in final stages. Good luck and God bless!

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sherry man, Community Member
1/16/10 8:16pm

My brother is 50 years old and in a nursing home due to paralsis of the arms and legs.  He has had the disease for 20 years.  He cannot talk or carry on a conversation. I wanted to know the last stage symptoms

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Vicki, Community Member
1/26/13 11:00am

that is the last stage...he will eventually quit eating due to not being able to swallow. and can't fight off infections.

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Ilaugh, Community Member
7/ 1/10 11:49pm

Sweetie for what it's worth let me say...........never lose faith. I don't know if you believe in Jesus or not but I can tell you beyond the shadow of a doubt He healed about 60% of my ms symptoms in 2003. I would be either completly paralyzed if not dead if He had not touched my body that day at church. I don'tknow why I wasn't healed completly but I hang on to the miracle and don't look at what the doctors, people or anything says about this disease.

   I have never gone on an ms web-site before and I was diagnosed 7 years ago but something told me to type in fatal symptoms of ms. I think I was looking for something else but when I saw your question I knew I should at least put my 2 cents in.

   God does miracles and He never fails.............and thisi s coming from a 41 year old girl that is at one of the worst times in my life. I've been abandoned by my family and also was going to a church that didn't offer any support. Their lack of syupport is probably due to not knowing what ms is and so I don't look to man for my help..........I look to God. He is the creator of all things and I know can fix all things as well.

   My first neurologist said I had relapsing/remitting but I think he knew it was secondary progressive and didn't want me to hear that. I just recently found out I'm secondary progressive...........but I say it isn't progressive it is primary diminished!

   Keep telling yourself you are getting better everyday and as you know already......don't listen to everything the doctors say. Personaly I don't listen to anything they say because it seems here in the USA the tend to keep people sustained in their illness and really never find a cure. How is it that they can clone a sheep and other animals but can't figure out how to dissolve a cancer tumor or grow back mylan sheath.

   Sorry I chatted so much........I will pray for you and ask that the Lord does a mighty miracle in your life nad body right now!

            Thank you for your time and reading what I wrote....................

sounds a little wacky I know but I think ms people earn a little wackiness after battling daily with this stuff.                                  Laura

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christine shelton, Community Member
10/31/10 1:56pm

Laura, thank you for your response and yes I am a Christian women dealing with this MS disease but I will not let it get the best of me! My neurologist is great with me and I truly think that I'm probably more advanced than I want to believe! I pray every night when i go to bed at night that my God, our God will not paralyze me to take the use of my legs and arms away from me! It's hard enough to know that I can't live my life long dream of being a classroom teacher, but I do teach sunday school, that has to fill my desire to be a great teacher!

Your replies are very uplifting for me so I give you my respect and blessings for all you need and do through God himself!

Christine Shelton

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jk, Community Member
4/25/11 10:43pm

Yes the Lord is the truth and the light! He is the master physician. He loves you. I am Catholic, I go to Eucharistic Adoration, where Christ is physically present.

You should make a visit. You do not have to be Catholic to sit silently and pray before our Lord, After you feel the love you may want to convert! The Eucharist is very healing. I have tried a lot of MS drugs, they just hurt me. I put my trust in the Lord. Jesus heals you! 

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FENWAY, Community Member
6/13/12 3:20pm

Seriously? What planet are you on? I am a Catholic too. I don't know ANYONE who has proclaimed such a blatant distortion of my religion. You make it seem like some revival thing where people are in a tent and falling down and being 'saved'. Sure, what ever works for you...but Jesus saves/heals your soul. Putting your trust in Him to make good choices to save your soul to meet him after your soul leaves your earthly body. But in no way is a proclamation made that drugs hurt. If you think that Christ is 'phsyically present' at these Eucharistic Adorations, HEELLLOOOO. Christ is present at all times, within us at all times. So unless He is walking around and having coffee with you, please. Enough. Then you need to contact the Vatican. I see my sister, in a hospital,with MS, unable to move, barely able to speak,her hands look like claws because therapy has stopped working. She doesn't have faith and I don't blame her at all. It is an evil and embarrassing disease. It is hard for her to watch her 83 year old mother visit her every day and feed her and wipe the drool from her mouth. HOWEVER, our mother, a devout woman,is a true mother. She has often told me that the reason God keeps her healthy is to take care of her. Illnesses like this are tragic and a peaceful and loving God doing this is easily questioned. Unless you look at it as my sister's suffering has taught the rest of the family to bond,kept an 83 year old woman active mentally and physically,another sister prompted to just get her nursing degree, elicit a new compassion and outlook. But telling others that neurological drugs hurt you and Jesus is the ultimate in healers is selfish. Each person needs to find their own way and method and let the people who have M.D. after their names and their own families to assist them. If your response was legit, how come there are tons of people still with MS and many other diseases and you are recruiting over the internet? If your warped logic were true, swarms of people would be banging at the door and no one would be suffering. My grandmother used to tell me when I was little 'Don't do that, God will punish you!' until I started CCD classes and I told her one day that ours is a forgiving God,not a punishing God. For those people who have lost faith, it is understandable. You don't have to believe in God, but believe in something. I told a friend of mine the other day who told me she now is a Buddhist that I  care if she prays to a kitchen sink as long as she believes in some higher power. Believe that something is out there that is stronger than yourself and it helps ease the feeling of such helplessness and stress of the 'why's'. No one has the answers to why things happen, no one deserves these. I don't think God is upstairs with a book checking off which people deserve things. If that's the case, explain why drug dealers to kids, rapists,murderers,child abusers are healthy as horses. Those who haven't committed sins are crumbling left and right. Did God already give up on them? He's not going to waste his time giving them awful drooling and painful diseases? They are the ones who should be suffering. But faith is tried by those who believe. But man does not live by faith alone. We were given free will. That is what everyone should know. Choose wisely. Choose what works for you. God may not be your answer. Some people eat Hershey bars if they are upset, some go to choice. FREE WILL. Everyone deserves help. advice, shoulders to lean on, support, but attempting to sway all to your belief is insane. Why not walk over to a temple and try and tell the Jews that they are doing it wrong too? But you are so in the wrong. People can feel LOVE through their disease. My sister can feel the love of her family that now surrounds her. I pray for her daily, sometimes to end her pain,sometimes to give my mom the strength she needs to deal. Giving up on the medical field is losing faith as well. If God is the Master Physician as you say, he has made delegates on earth. DUH. Men and women who have dedicated their adult lives to researching and treating those who are sick. Your faith is so limited. Faith in God,honey, means faith in others,BECAUSE IF YOU ARE THAT DEVOUT OF A CATHOLIC YOU WOULD KNOW GOD IS EVERYWHERE. FROM TREES TO DOGS TO BABIES TO THE KIDS WITH ADHD AND THE CEO'S OF COMPANIES. To all of you atheists, have faith. In your doctors, or your families,or in your mental state of mind that just because you have MS or any disease, you are no less of a person. You are still 'you'. I have epilepsy yet I don't define myself with it. I am a person,a beautiful person with a phenomenal husband,2 super kids, a house and a dog. I am lucky and so are they. I have 2 sisters and 2 brothers and tons of nieces and nephews and I adore each and every one of them as individuals and I don't shove my beliefs down their throats. I love them for them, accept them,welcome them, cherish them. I enjoy their individuality and respect them and they know they can rely on me and talk to me and I don't judge. So we all need to just research our illnesses but first let go of the anger of why we have it. Then move forward into not necessarily healing, but maintaining levels we are at and slowing progression. Or at least come to the realization that we all are going to die of something. Strokes,cardiac arrest, kidney failure,car accidents,murders,even bee stings.

 

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Stacy, Community Member
6/26/12 10:18pm
I'm not Catholic; but I am a very committed follower of Jesus Christ. I have secondary progressive MS and the drug (Gilenya) that I started Nov. 2010 seems to be working for me. Latest MRI showed no new lesions or progression of this disease. I thank God every day for allowing me to live in these days. Researchers & scientists have truly made ground-breaking discoveries in the study of MS over the last 10 years. I was dx'd in 1985 at age 25 - and there was NOTHING even remotely on the horizon for MS. We live in a fallen world. Bad things happen. Fortunately our lives on this earth are but for a brief moment. This is just a rest stop for me, and I look forward to my eternal home! Reply
Justbe..., Community Member
7/ 7/12 6:51pm

You seem level headed, realisitic and may have some insight as to what those who care for people with MS may deal with. Being recently diagnosed at 35, married mother of two, I worry about what my husband and children will have to deal with in the future. I will tell you, although not atheist, I am agnostic. I am looking for guidance on how to prepare them as well as myself for the future. Would you be at all interested in corresponding with me?

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AnitaB, Community Member
9/19/12 10:11pm

Thank you for you realist answer, Fenway.  So tired of all the religious rhetoric.  My best childhood friend (we are both 59) has had MS for a few years now. She is in her last stages. She remembers certain things but babbles on about things that never happened and are not happening.  It has clearly affected her brain. Tuesday night at the nursing home I wheeled her around in her chair.  I know we will never speak as we once did.  In truth, I have really lost one of my oldest dearest friends, at least for now.  It is so sad.  She battled depression for years and I think she allowed herself to sink into the disease as she has it now.  Her blood pressure often drops so low that she could die in her sleep.  I see how angry you get with these people who think they know everything and I want you to know I agree with you.  We are all each others keepers and sometimes we self inflict our  illnesses.  I love my friend but I always felt she was too pitying, too needy.  It's almost like she willed this for herself.  I will be with her to the end.  And learn from it.  I just wonder how long that will be. 

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JK, Community Member
10/16/12 8:57am

Suffering only makes sense when you meditate on the Cross. The Crucifix. I know this is hard for you to understand. Of course God is everywhere!  He is in a special way present in The Eucharist according to my faith tradition, Body, Blood, soul and divinity.  It is not always the most important to heal physically.  It is hard to watch the people we love suffer. I feel for you. God truly does love you and your family.

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Mem, Community Member
10/17/12 4:36pm
I have Rapidly prgressing MS- former Christian now agnostic. Your reply kicks arse. Cheered me up anyway and deeply touching. Reply
Wadd, Community Member
12/17/12 1:09am

Take it easy! Stop being so negative.

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Jeffrey Davila, Community Member
9/ 8/13 1:18am

Your comment "If your response was legit, how come there are tons of people still with MS and many other diseases and you are recruiting over the internet? If your warped logic were true, swarms of people would be banging at the door and no one would be suffering." has an easy answer: Fear. Fear stops everything. You are judging all over the place and offering those who are suffering nothing. I have many folks in my life with an MD after their name and I wouldn't trust them as far as I could throw them regarding MS. Have they cured MS? Do they know what causes it or how to stop it from killing you? Faith is more powerful than any medicine and that is not to say medicine doesn't do amazing things BUT it can't cure MS. Over the years I have watched many unbelievable things come from people working outside the box of traditional medicine. How about Dr. Terry Wahls, MD? Check out her Defeating Progressive MS Without Drugs and ask yourself why isn't everybody doing this? How about fear? The same kind of fear and sense of defeat you experience when you hear of others resorting to faith rather than the local MD. Dr. Wahls used a non-AMA sanctioned treatment protocol she developed and is out of her wheelchair (with secondary progressive MS) and after one year is now riding her bike. So why isn't everybody doing it? Faith, determination, insight, courage, and hard work are the tools of change. You may die anyway at the end of it but at least you will not die afraid. When the journey through the nightmare that is  MS comes to an end it takes us all to the same place. The journey ends for all of us and once the journey ends the quest will be forgotten.

 

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MintsonthePillow, Community Member
11/14/13 12:06am

Amen!

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MintsonthePillow, Community Member
11/14/13 12:16am

Amen Fenway!

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gr4vity, Community Member
6/26/12 12:19am

Are you sure??? because this so called lord isnt healing my mom...and are you sure that taking her to a building where the lord or whatever is "present" is just going to magicaly take her disease away?? there must be a lot of lords, because that isnt the only building that he is "present." and if this so called lord (in which i am having trouble beliving in now) heels people at this place, why isnt there a long line of people at the door waiting to be heeled. why cant this lord be present everywhere and help stop things from being so damn miserable?!?!?! when you break it down, we are all just atoms...how is there some big person in the sky?? it makes no sence. all we are is just animals like dogs. we are mamals, just more intelegent than others. we all started off as jewish people until a "virgin", mary, got pregnant with jesus. it is imposible to be a virgin and pregnant knowing the whole cycle of a pregnancy. there was no magical sperm or whatever. the point is, MS is a permanent disease and praying in a building wont take it away, sorry...i apologize for crushing anybodys hopes. there is hope that the patient will live longer through ms though...

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Paula Stewart, Community Member
7/15/12 5:13pm

I feel so sorry for you. Not having anything to believe in.  No after life.  How sad!!  My husband who is 58 years old was diagnosed with tumefactive multiple sclerosis in October of 2011.  I still have whole lot to learn about the disease.  There has been no periods of "remission" for him.  He was hit hard right off the bat and has not been able to walk nor have the use of this left hand.  His periods of remission is being able to sit up by himself without falling over, he has not been able to walk by himself since his initial attack. 

Right now my son has to lift him out of bed, into a wheelchair, on to the toilet, into the shower.  If we did not have an eternal and almighty God to get us through this.  And God is all about being able to do things that cannot be explained otherwise.  Like a virgin being pregnant.  I tell you it takes less faith to beleive in Jesus than it does to beleive that we all, including the earth itself, came from a one celled organism via a "big bang".   

 

I really would love to engage in a true deep Bible study with you, not just to explain a "pie in the sky" theory as you probably think of the christian faith, but to honestly approach the study from a scientific aspect.  Every single item that the atheists use to explain evolution can be explained Biblically and it's a very interesting study I can assure you!  It's truly amazing to look at the Bible from a scientific aspect.  It includes things in that we have never even given a second thought.

 

And no, taking someone to a building to be healed is a bit nonsensical.  Jesus lives in our hearts and all we have to do is obey him.  He doesn't promise us a bed of roses but he is made perfect in our weaknesses.  Strength of others during times of dire trials are how you see Jesus living in others.  We survive because we have a hope within us that cannot be explained otherwise.

 

I wish the best for you mom and will keep her in my prayers. The best that I can do for my husband now is keep him very comfortable and let him know that I'm there for him.  It's difficult for myself and my two children but if we didn't have Christ in our lives we would not have been able to come through this thus far. 

 

There is hope and I hope that you are able to find it some day.  I'm here if you need to converse some more.

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MS 31, Community Member
10/29/12 6:38pm
You could not have said it any better!! I was dx with MS one year ago, a single mother of 2. Without Jesus Christ I would have fallen apart about 6 months ago. He is not only a healer but a provider and so many other things including my strength when I have none to give to my children. I will pray for everyone on this blog and hope the believers do the same for me. Reply
pattymm, Community Member
4/ 9/13 1:08pm

Hi sister in faith, I am a Christian Catholic too. Thanks for the advice. I will try to do that.

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pattymm, Community Member
4/ 9/13 1:08pm

Hi sister in faith, I am a Christian Catholic too. Thanks for the advice. I will try to do that.

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prince7022, Community Member
3/ 7/12 5:14am

Thank you

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DIEGO, Community Member
4/11/12 4:27pm

Thank you sister. I just got Diagnosed with MS. I'm 47 and confused and scared. However, I agree with you. God is the one so to

 

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Lorraine Cookson, Community Member
7/29/12 2:46pm

Laura

 

Thank you so much for your reply it has blessed me so much I too am a born again Christian a Pastors wife and recently had ON and suspected MS. I have had MRI scan two weeks ago and await results. A nurse has just told me all MS patients eventually degress and their musles shut down. 

 

However I am refusing to believe this because she doen't know Jesus -I was prayed for by many people when I had ON and suddenly it went away and although their is still a non perfect visual it is 95% normall. My bladder is completely healed and in 5 months I have had no symptoms come back apart from  nervousness and apprehension over the whole thing as everyone is telling me doom and gloom stories.

 

You have given me hope and reknewed my Faith that I am not the world's child i am God's child and he needs me to be his servant and will look after me as he has you.. He has his hand on your life when you give it to Him at Salvation

 

For everyone else reading this -Go to  Church and give your life to Jesus .He is the great Physician, He is the great healer and he is alive and is still healing people today.

 

God Bless you all

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Charlie, Community Member
8/31/12 6:27pm
What that nurse told you is rubbish. These days an equal number of MS'rs can and do live normal lives. So called healthy people die in the same way you have described which is also causes by old age! Nursing and medical staff should not be do damn negative Reply
Deborah, Community Member
9/ 5/12 9:23am

Thank you for your words of encouragement.  My husband has primary-progressive MS and is paralyzed.  The neurologists continue to confirm the diagnosis, but have no helpful treatment, etc. 

My husband has had the condition for 10 years.  I am his primary caregiver.  We take it one day at a time, trusting the Lord for a miracle and accepting what each day brings.

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brenda, Community Member
9/ 8/12 11:10am

Yes Laura you are right , believe in God he does heal, and yes I do believe that doctors will use you a test rat if you allow them to, I have had MS I was told two years ago that , they think it has been five to seven years i've had it, I still work and I thank the lord everyday I can , they tried me on copaxon and I had a bad reaction to it and now they want to put me on Galiey ? i'm not sure how to spell and this is a new medication, my heart told me no and when I spoke to some people they said this medication is killing people, well I will not be their lab rat i'm sorry , I have been healthy thanks to the lord and I want to stay that way for awhile longer. Just have faith and believe .

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Sharon, Community Member
9/24/13 8:51pm

The drug is called Gilenya.Go to Gilenya.com and read . It is an oral capsule and has been on the market for nearly 3 years. It has helped 70,000 people with MS. I encourage you to read medical journals which have been peer reviewed. Blogs are FEEL good places to express one's emotions but when it comes to your heath I recommend you look for the facts. Multiple Sclerosis is a complicated disease which requires many approaches due to it's complexity. Please educated yourself about the latest treatments and consider joining a support group through the MS society.

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Wadd, Community Member
12/17/12 1:06am

Coming from a Christian home with a mother who cherished her God,beliefs and bible, I know the power of the Holy Spirit. With positive thinking and God on your side, you have a prognosis made in heaven. Although my mom is now gone her faith still carries me on down the road of life. She shines down upon all of us shedding Gods light amongst us. Faith will ALWAYS se you through. Moms favorite saying right up until she was called to her heavenly reward.....'Live For Jesus." there isn't a more powerful medication than THAT!

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praisem, Community Member
12/11/13 4:06pm

Thank you Laura for that Godly response. I was diagnosed in 2010 but I had it for some time. I am now 42 and has also had fibromyalgia since I was 17 years old. This year two of the lesions on my brain were completely healed thanks be to God. I am on copaxone and baclofen but Mellon Center here in Cleveland Ohio has given me little help, just great MRI's and great doctors. I barely go to the doctor, I try to stay in the water and stay in when it is extreme weather (whether hot or cold). But even the doctors at the center couldn't believe it after I had the mri. They knew it was a miracle. So don't be discouraged and don't look up too many websites because it's always bad news. God will never fail you whether good or bad. Even if you leave this earth earlier than you think at least you will have the comfort of knowing that you will be with him. I have made my resolve in this matter.

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christine shelton, Community Member
10/31/10 1:48pm

I have just been diagnosed with MS and so far i've been handling it as well as I can! The hardest part is after receiving my master's degree of elementary education, i don't think it's fair of me to be in the classroom running my own classroom like I had initially planned 10 years ago! I'm angry but this disease cannot beat me! Any other words of advice you can give me? i have 3 of my own kids and they try to understand my constant migraines everyday, all day!

Please advise!

Christine Shelton

 

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Dani-Rae, Community Member
12/22/10 3:34pm

After a horrible life, being dx with PPMS was the last straw. I am now an athiest.

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AGSerra1, Community Member
2/12/11 10:36pm

I am so sorry you feel this way but having faith is your choice and it is certainly understandable why you would turn away from God and having faith ..

 

None of us can ever know how you feel  , I know I can never compare my MS to yours nor my preference to be loving God person .. having faced a life/death situation changed my view and I turned away begging why ? Why me ?

 

Well, ithis is life and there are NO guarantees written nor implied when we are born .. Death is a part of life and I choose to believe that I am going to a much better place that has no pain , no illness ..

 

I do not fear death any longer and have accepted that it is just a part of life .. I may sound redundant but if not for the grace of God I know I would not be here today and if I should die afer all the "suffering" then I welcome God to take me home .

 

I now see life differently , much clearer and hold dear all things even bad that I call "experiences" or "adventures" .. I cannot write all I have been through and al I have done in my life here but know this . I am stronger in my belief for them and I take not one minute for granted ever and I thank God daily for allowing me to hear the birds , pet my dog , talk to my family and friends  ..

 

If you feel you need an ear I am here for you .. I know you do not know me but I know me and I would love to help you feel you can regain some control and pray that you can do the following .. acceptance , forgivness and peace .. I am here if you would like to just talk .. Adrian

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AGSerra1, Community Member
2/12/11 10:37pm

The above is for Danae .. from Adrian

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Dani-Rae, Community Member
2/21/11 7:56pm

I really appreciate your concern, Adrian! I may be an athiest now, but I firmly believe in most of the "Christian" priciples. They just make sense to me. The idea of an omniscient, omnipresent, all-loving being does not make sense to me. Being a kind, accepting, forgiving, loving person and having peace of mind is NOT exclusive in the belief of GOD! I do not lie, cheat, nor steal. I am honestly concerned about ppl in general & help whenever I can. I do my best to live by the golden rule. The insinuation that these characteristics are only in those who believe in God is quite insulting, but I know you didn't mean it to be, so I'm not upset about it.

I feel I have as much control as I can have now. When 1st diagnosed, I crawled into a bottle for about a yr, in deep depression. I have since started excersising & stretching. I get out of bed every day that I can & do as much as I can, like running errands, cleaning house, cooking for my husband, etc.

As I said before, I truly do appreciate your concern! I can see the genuine love you have for ppl, as do I.

 

Thank you,

Dani

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AGSerra1, Community Member
2/21/11 9:25pm

Dani - thanks for your understanding and I am happy that you have peace .. always good to hear .. be well and stay well .. Adrian

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A Christian Heart, Community Member
2/28/12 12:16pm

Dani-Rae, I am a 43 year female with MS also. Your comments about being an atheist really struck a nerve with me. I pray that God touches you in such a personal way in a personal experience during your life that you know without a doubt that he is alive well and the King of Kings. I saw an ad one day on tv several years ago of an atheist group and there on the front line was about a nine year old girl. I've never forgot it>  I felt so sad for her, no hope , no belief, and this is what  this child is taught by her loving parents.I had these same feelings when reading your comment. I am so thankful that God has shown me personal miracles and that I have a real relationship with Him that I have truly felt his presence in my life. I am Blessed! I dont feel sorry that you also have MS, I feel sorry that you have let Satan decieve you to this point. You will definitely be in my prayers and I hope that if you have the oppurtunity you will hear with your own heart the voice of Our heavenly father and just believe before you die. The stripes on his back are representive of our healing not necessary in the physical body because it will turn to dust but our spiritual being which will be forever.You have a soul that will never die. Sincerely, A Christian Heart (a unworthy Sinner saved by grace ) who will be praying for you and will surely never forget your remarks. I've said what God put on my heart to say to you. I wish you well.

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Shay, Community Member
5/ 4/12 6:14am

Hi Dani,

 

I'm not an atheist (yet) but I share your feelings and most of your beliefs.  I do not have MS but I have a permanent muscle disease which keeps me bedridden most of the time and is extremely painful.

 

If God is merciful, I haven't seen much evidence of it, and I'm not referring to myself.

 

If some people believe prayer helps, fine.  But I don't think you can pray away a disease any more than you can pray away a broken leg.

 

You sound like a very sensible, good and kind person.  I wish you the best.  Sincerely, Shay

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mayflowerimmigrant, Community Member
6/12/12 8:27pm

Dani,  I wish you would go by yourself to a mountain,  sit for a long time with a gorgeous view and congratulate yourself or your government or Captain Kirk for

blessing you with what you are seeing.  Look up to the heavens, feel the warm grass beneath your feet, put your your feet in a creek and listen to the water.  Sit in the mountains of N.C. on a rock for 10 minutes and shut your own thoughts ask God to Help and you will find Him,  He is waiting for you child and has been a long time.

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Justbe..., Community Member
7/ 7/12 7:05pm

Not believing in "God" doesn't mean there isn't a higher power. Have you by chance looked into Buddhisim? You mention, The golden rule, do unto others is the main philosophy in my view and really has given me perspective. I'd love to chat with others in my situation. I think it's of the utmost importance to have a connection to those that are going through this diagnosis given it's lack of difinitive treatment, outcome, symptoms, etc. The best we have in this fight are those that are going through it as well. 

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miss.hernandez.ewu, Community Member
10/18/11 10:24pm

 

We need more caring people like this I am a 20 yr old....recently diagnosed last May 10’ going to Eastern Washington University here in Washington State. All I can say is; it is very hard dealing with this when you live hours away from your family and trying to balance school and life altogether alone and trying to keep focus on the things you once had. I guess you can say somehow I have lost many dreams and hopes and all I do is wonder why me? I’m truly tired of living this way and I want to pull away from all those little negative things that surround us every day. I want to feel once again what it is like to go out and hang out with friends, go out swimming without wondering is the water to hot or too cold? Because, if it is not at the right temperature I am going to fall into a relapse. I know this is insane to think this way but honestly how else must I live my life I am so young I know God has a way of selectively choosing why he does the things he does to the people he decides to, I know I should not question his ways.....but honestly why me? I guess I need to go out and enjoy myself I keep telling myself I have my whole life ahead of me....and with faith I truly hope God takes care of me and does not abandon me.

 

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AGSerra1, Community Member
10/19/11 5:49am

Hello - just wanted to say that sometime's the more I concern myself with my pain and fatigue the more pain & fatigue I have .. it can be a vicious cycle especially in the beginning stages of the MS journey .. I not only apply my Christian beliefs but those of Ghandi and Budha , am I wrong ?? No, being raised Eastern Orthodox teaches us of tolerance, understanding and love .. especially for those less fortunate than us ..

 

No one can tell you how, why or when .. your body will however let you know better than any answers offered here .. learning to get in tune with your inner self and body helps us to adjust to cliamate , work, school .. meditation is a great stress and anxiety reliever , yoga is awesome for what pain or stiffness and giving yourself a hug and a good cry now and then ..

 

If there were a counselor on campus , I would seek them out , finding that any form of release can ease worry and when we releive, worry we can also reduce pain .. relesing anger is just as important as releasing worry and as a "disabled person I can tell you my experience with a disability therapist for two years helped me slip into my old self after many tears , journals and speaking frankly and openly with another .. my therapist is/was blind , she understood my pain both in and out and was able to help give me tips ..

 

I still keep in contact via email as I am now 3 years out of therapy and living back in FL and she is in NM , my Mary .. my point is getting help outside your circle, comfort zone, religion and getting to know you better can help as well as journaling and really understanding what it is all about .. good luck and as always hope this made sense ...

 

Much love and peace ...

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Laura L, Community Member
5/ 4/12 10:50pm

I had to write you when I read your note.  Please don't give up!! You can still have all your dreams.  I was diagnosed @ 41 @ that time I was getting married for the first time in my life in 6 mos and finally (after a long time coming) graduating from college with my B.S. degree all while holding down a full time job.  I was ill off & on x 6 mos, and 2 mos after I got married had a major attack that put me down for 3 mos and disabled me off & on for a year. I was told that I had progressive disease and would be in a wheelchair in a year, well......

I found an amazing acupuncturist / holistic dr.who believed in me and started treating me with diet and acupuncture along with my M.S. regimen, in 6 mos. and I am not kidding you I went into remission that lasted for 8 years, I did not exercise all I did was take vitamins she gave me and change my diet( now that was hard).

You have your whole life in front of you, my disease started as relapsing remitting and now 10 years later I have progressive disease.  I have a tough time now, but I refuse to listen to anyone who says I can't do something.  When I first got sick I pushed everyone away from me because they didn't understand the numbness, pain, fatigue, but after doing all I could for myself and actually seeing a difference in 68 days and going off most of my meds except my shots I had hope again.  It  was worth all the $ in the world to feel better (that's why God made credit cards)  Don't give up kiddo, even now as bad as I feel I know I will make it through.  God is cool but God is in you and you can't let this disease change who or what you want in your life. Therapy really helped me and the one thing the therapist said that saved my life was,

"Stop worrying about what you can't do and start focusing on all the things you still can do"  That really changed the way that I thought I wish you luck. You will be o.k. don't ever ever give up..

Laura

 

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miss.hernandez.ewu, Community Member
5/29/12 2:28pm

Hi Laura,

 

Sorry it has taken me so long to write back to you. It is that I have been so caught up with school and finals....I just wanted to personally stop by and thank you for your kind words they were and still continue to warmth my heart. Congratulations on your marriage and your BS and while still having to manage a full-time position that sounds very hard and stressful. I am very glad to hear that you are doing much better. If you don't mind me asking you, what shots are you on? I am on Copaxone and this has worked with me and helped me control my MS a little more than when I was not taking any. There are some flaws to it that I strongly dislike as for the fact that it is a daily-injection and bruises. I believe that all this has played a big part in my life because nowadays I find myself falling into depression here and there. I am also taking this herbal tea which is actually what I feel has truly helped more than my shots I have a lot of faith in it. Yes, I was one to NEVER believe in anything like this but after knowing another friend of mine whom was diagnosed with MS as well and was knocked down completely for a month paralyzed from the neck-down. The doctors could not give her anything at all nor hopes that she would ever walk again or be able to move. Soon after, she was released home and about two weeks later after starting this tea she was moving and now walks and moves perfectly fine (the doctors themselves could not believe it). She seems to have her bad days at times like anyone else with MS but she feels great and not only did this tea fully help her within a month but it gives you energy. I myself am on my second bottle of tea which the first one lasted me about a year. I am not a promoter or a third party type of seller I am just a regular person like everyone else explaining the options that I have taken to help me with my MS. If you ever have any questions or just want to talk; you can email me to my personal email miss.hernandez.ewu@gmail.com. Thank you once again for sharing your story with me I hope we can remain in contact.

 

~Vernice

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Charlie, Community Member
8/31/12 6:34pm
Great entry! I'd also refer you to the website overcoming multiple sclerosis by Prof George Jelinek. It's not too late to use good nutrition a great attitude ( prayer based if you so decide) to halt MS. After following his diet and undergoing a big detox I was firmly in remission, had a child, travelled the world and still work as a lawyer. However what have I learned, you are what you eat, don't overdo it and a simple prayer of thanks on occasions makes me feel great! Reply
NayNay, Community Member
3/ 2/12 9:02pm

My dad has MS, he thinks his chair and things are moving. Is this close to him leaving us?

 

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peace, Community Member
4/16/12 5:52am

Your question here is a bit confusing.  "is this close to him leaving us?"  I am a female 46 year old female, diagnosed in 2007 with M.S. I know that I started having symptoms ten years prior to being diagnosed when I was about 36: dropping things, confusion, fatigue, dizzy, migraines~etc.  The lesions were confirmed in many MRI's with contrast and then in a spinal tap with conological bands.  One of the major signs for me was vitigo which feels like things are in fact "moving" which it sounds like what your father is describing.  There is medication that can be given to him to help him with this if he is able to take this and if he has health insurance.  None of us will now when our last hour will be here on this earth so it is hard to say in answer to your question if your father is leaving you as a sign that he might be in one of the past stages of dying. His doctor should give you a better idea of that.  In my experience, when someone is close to death their are other signs that show they are near the end: labored breathing; TIA's; strokes; coma; etc.  Have your father seen by a physician if you believe he is near the end so that he can die with dignity and with out pain and suffering.  Hospice can be a helpful option.  

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LinDiego, Community Member
7/ 4/11 2:42am

What I believe is (sounds trite) that when one door closes, another opens. If you think hard enough and long enough, you MAY come up with a different career than being in an elementary classroom all day 5 days a week, which is soooo hard on the body and mind of even a marathon runner, in my opinion. If you like to write, maybe you can write at home? Or start a business you can run from home? (I like that... run...). Your MS might not limit you "other than" migraines. Maybe soon they can be controlled. And you won't be bothered with any other MS symptoms. If I were you, I would have a Plan A, and a Plan B. Plan B may not be on the tip of your tongue at the moment. But your brain, especially while you are sleeping, will be creating ideas! For example, another idea is some kind of teacher training. With your Masters done, you are to be congratulated!!! Your school district can give you some ideas for your Plan B: what can I do with my Masters besides teaching in a classroom setting? Best of luck!

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diane, Community Member
5/16/12 4:33pm

How would you feel if you walked into your neuro's office and you said I am going to fight this and not give into it.....He says...you don't have a choice, it is a disease of the brain and the brain controls everything.  Since then, I could care less what happens, I dont really care if I miss an injection or meds. The after life is looking better everyday.

 

 

 

 

 

 

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Ann, Community Member
5/26/12 9:17pm

I would feel horrible, just like you do now. But I would get another doctor right away, for the one you have is very insensitive and that will be a problem throughtout your treatment. You don't need that problem.

 

That Dr. cannot know the exact course of the MS you have. That is very hallmark of MS--unpredictable! Yes, it is a disease of the nervous system, but you have the right attitude. You fight it and don't give in. I've seen ordinary and amazing things people with very bad MS have done with their lives. 

 

I cannot believe he would say that, like it's hopeless and that is that and you have to suck it up. That Dr. is dehumanizing you. You are not merely the vessel for MS, you are a person and you have a life to live. 

 

Don't listen to him. Get a new doc, go talk to someone who knows how depressing the MS diagnosis is and how difficutl living with it can be. But don't give up on yourself because of his careless words.

 

 

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Sharon, Community Member
2/19/13 2:46pm

Very First thing I would do is find a new neurologist! I was dxd in 1998. You must fight this disease and not give into. I always say everyone that lives on earth has trials and tribulations this just happens to be one of mine that has a name.  The meds and injections do work.  I have quit mine before and have gone off of my injectables but then realize I need to do all I can.  Sometimes you feel defeated and hill seems really high but is when you have to reach out to prayer and a support group or blog and talk. Also that neuro that knows what he is doing. Yes this is a disease of the nervous system and controlled by the brain, however you have to care and you still have many many choices. I would love to chat with you and help you through this difficult time.  I have been where you are!

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Marie Aughtry, Community Member
3/12/11 8:17pm

My husband was diagnosed in 1992 and managed quite well until he fell in 2005, hitting his head causing a subderal hemotoma. After brain surgeries, his mobility was affected and cognition and memory  to a small degree. Last year after a bout with a couple of UTI's and being bedridden for awhile, his mobility decreased to the point that I must use a hoyer lift to move him. His depression for the past year has been severe and we have tried many different antidepressants with no success. WE are currently on hospice, primarily for the help I need to care for him at home.  He sleeps most of the time and has no interest in anything. He does not want to eat or drink and appears to have totally given up. I am wondering if the MS could be causing his body to shut down, affecting the depression, or what I can expect if things continue in this direction.  Thank you for your help.

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Lisa Emrich, Health Guide
3/12/11 9:23pm

Marie,

 

So sorry to hear that your husband's situation has turned somewhat downward.  Depression is a nasty beast, no matter how mobile or able someone is.  It's certainly possible that the MS itself is affecting his depression.  And perhaps the brain surgeries affected his thinking (mood) as well.

 

When my grandmother (who did not have MS but did develop dementia) stopped eating, they used a feeding tube with her.  She was sustained this way for quite a while.  At some point when she was no longer conscious much (if not all) of the time, a decision had to be made to stop feedings.  It was a hard decision.

 

However, there should be steps between his not wanting to eat, using supplements such as Boost or Ensure, and a feeding tube.  Ask the hospice nurses what their experience has been.

 

On another note, I've heard from some caregivers that their loved one stayed were in hospice for a very long time.  It's good that you have help at home though. 

 

You may want to check out the blog of a dear (online) friend who has primary progressive MS.  AccessDenied-LivingWithMS. The author, Herrad, has been through a lot in the past three years, being confined to bed due to a deep pressure sore was one of those things.  However, she manages to maintain a positivity which is contagious. 

 

Does your husband use the computer to connect with other people living with MS?  I don't know if that would help with his mood, but it is worth a try.  I have found it to be tremendously important and I do not have the physical limitations which many patients do.

 

Let me ask, how are you doing?  You've been dealing with MS for as many years as your husband.

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Kimberly Jaskulka, Community Member
5/16/11 9:33am

I am a home hospice RN and have a 56 y/o male pt., diagnosed >20 yrs ago, being cared for in his home by his wife and 3 daughters. I would like some material to leave with them to support my findings of his physical symptoms that he is nearing death/dying. Thank you for your help.

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Lisa Emrich, Health Guide
5/17/11 11:43am

Hi Kimberly,

I'm not sure that I've seen printed literature specific to MS which would be designed to indicate that a patient's death is eminent.  You may try contacting the National MS Society (http://nmss.org) to see if they have something to offer.  I would think that hospice organizations would offer literature to offer the families which discusses the process of death itself (not specific to MS).  Maybe you could approach it that way?

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Ann, Community Member
6/15/11 10:33pm

hi kimberly, see my post at the end of this page, and a few others along the way..

 

Ann

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Ann, Community Member
7/ 4/11 9:24am

Yes, there is literature specific to end stage and advanced MS. 

 

http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

 

On this page, please find the document listed below the main article and video, called "Advanced MS: a guide for families" .  

Print it off and refer to it often as things change.  

 

for those in the UK, there is a similar link:

http://www.mssociety.org.uk/downloads/MS_Essentials_16_Support_for_people_severely_affected_by_MS_-_web.8df5f599.pdf

 

Read both, as each one has important info.

 

to read more about Palliative care (things to make the person feel better, but do not count as a treatment or cure) :

 

http://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/palliative_care.html

 

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Ann, Community Member
6/15/11 10:43pm

 

 

http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

 

On this page, please find the document listed below the main article and video, called "Advanced MS: a guide for families" .

Print it off and refer to it often as things change. 

 

for those in the UK, there is a similar link:

http://www.mssociety.org.uk/downloads/MS_Essentials_16_Support_for_people_severely_affected_by_MS_-_web.8df5f599.pdf

 

Read both, as each one has important info.

 

to read more about Palliative care:

 

http://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/palliative_care.html

 

signs: in addition to all the typical MS symptoms of stiffness and being bed or wheelchair bound, what makes it end stage is new or worsening

problems with Breathing- shallow and ragged sounding, labored, pneumonia, Swallowing problesm that result in choking on food, fluids, saliva, talking, worsening bladder and bowel problems, having a permanent catheter, pain patches such as morphine or fentanyl patch, disoriented, lack of focus, crying out in the night, not sleeping through the night, needing more and more from you because they are uncomfortable, such a drink, repositioning, more pain medication. Changes in mental attitude, worsening depression, forgetful, worried, anxious, confused....

 

While most MS does not take this form, for the 10% who do, they need info. I think you will answers to all your questions at those links. 

 

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Ann, Community Member
7/ 4/11 9:25am

http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

 

On this page, please find the document listed below the main article and video, called "Advanced MS: a guide for families" .  

Print it off and refer to it often as things change.  

 

for those in the UK, there is a similar link:

http://www.mssociety.org.uk/downloads/MS_Essentials_16_Support_for_people_severely_affected_by_MS_-_web.8df5f599.pdf

 

Read both, as each one has important info.

 

to read more about Palliative care (things to make the person feel better, but do not count as a treatment or cure) :

 

http://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/palliative_care.html

 

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Ann, Community Member
7/ 4/11 9:13am

This thing everyone says, "MS does not kill you, the complications do", is a phrase I would like to see eliminated from MS talks or at least put in perspective. MS can kill you because at the end stage, it is shutting down every single thing we need to live:  eating, drinking water, breathing, being able to eliminate. Pain, vision and speaking problems all make end stage MS an isolating and scary time for the person and their loved ones. It doesn't have to be that way if you take some steps now.

 

While most MS does not get to this stage and the person will have a normal life expectancy, for those have been told they are at "end stage" or have "advanced" or "severe" MS, they need info. If you've been told this, take notice, for it is serious for you. 

 

Signs: while there is no definitive timeline and not everyone will have all of these things, what you can expect at "end stage MS" ( in addition to all the typical MS symptoms of stiffness, vision, speech problems,  being bed or wheelchair bound) is new or much worsening problems with:

1. Breathing- shallow and ragged sounding, labored, many bouts of pneumonia

2. Swallowing problems that cause choking on food, fluids, saliva (and this can cause the person to inhale (aspirate) of food and fluid into lungs which in turn causes "aspiration pneumonia"

3. Worsening bladder and bowel problems, having a permanent catheter. 

4. Pain starts or becomes much worse, and the person needs strong pain meds, such  such as morphine or fentanyl patches. There can be very dangerous drug interactions with the MS drugs, anti-depressants, sleeping pills that can slow the heart and breathing to life threatening levels. Drug addiction can result as well. 

5. The drugs and/or the MS make person more disoriented, lack of focus, crying out in the night, not sleeping through the night, needing more and more assistance from you because they are uncomfortable, need a drink, repositioning, more pain medication. 

6. Changes in mental attitude, worsening depression, forgetful, worried, anxious, confused...

7. Having a feeding tube.

8. Needing a respirator.

9. Needing 24 hour care.

10. Many more trips to the emergency room and hospital stays for any of the above problems, and/or infections, low electrolytes, low blood oxygen, low pulse, and more.

(I recommend that all caregivers and loved ones learn to take pulse and listen to heart and lungs) 

 

I know some with Primary Progressive go on for many years while others have died within a year of the diagnosis. Over time, some people who had one form, are reevaluated to having Primary. As everyone comments, MS affects people differently, even when it has same diagnosis of form. This is partly because some are not diagnosed correctly initially and partly because of the individual nature of MS. 

 

I am very happy that most people do not get this form of MS and do not end up dying from MS. However, to gloss over the reality for those who have a "end stage" or  "severe" and "advanced" of MS is a disservice to them. They need info so they can decide for themselves how much they want to prepare for death. Most people just keep going on as usual where others want to have certain talks or have certain experiences while they still can. Not to look at this or talk about the end, may deprive the person of the extra care, such as more assistance or hospice, that may be needed to make them as comfortable as possible. 

 

No one wants to face or dwell on this, but the reason you have to look at this info is because if you or a loved one has "advanced" or "end stage MS", you will need a strong advocate and the caregivers and loved ones need learn how to make that person more comfortable, spend more time with them maybe looking at photos, listening to music, bringing in a pet, or reading a book aloud, things from the outdoors, such as fall leaves, or beach sand, or a wildflower, things they have not seen, smelled or touched in many months or even years. Or maybe they want to take a trip even if it will be hard to do, or do something wild and crazy!

 

And you'll be amazed at what you can learn about life from the loved one with MS. 

 

Many times, the person with MS has come much farther in their journey of acceptance than those around him or her, and they may welcome extra attention. Some may not, let the person guide you, but try…even if the person resists at first. He or she may already feel "like a burden" and not want to "impose". But this can be time well spent that brings meaning and reflection upon a life together, the present moment, and the future, for both the loved ones and the person with MS. 

 

I am not  in the medical profession, just a person who was there while a loved one declined and passed away from MS after a 10 year battle with Primary Progressive. I hope this will be of help to those who are wondering what to expect and what they can do to help. 

 

I wish you all strength and compassion for yourselves, your loved ones and caregivers on this most difficult journey.

 

I think you will find answers to more of your questions at these links. 

 

http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

 

On this page, please find the document listed below the main article and video, called "Advanced MS: a guide for families" .  

Print it off and refer to it often as things change.  

 

for those in the UK, there is a similar link:

http://www.mssociety.org.uk/downloads/MS_Essentials_16_Support_for_people_severely_affected_by_MS_-_web.8df5f599.pdf

 

Read both, as each one has important info.

 

to read more about Palliative care (things to make the person feel better, but do not count as a treatment or cure) :

 

http://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/palliative_care.html

 

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kate, Community Member
3/10/12 8:24am

your thoughts touched me.....kate

 

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kate, Community Member
3/10/12 8:24am

your thoughts touched me.....kate

 

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JanG, Community Member
6/10/12 9:12pm

Thank you for this information.   It is definately glossed over.  Family needs to know what to expect, how to prepare.  

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Diogenes, Community Member
6/19/12 9:02pm
finally, I have found some straight answers without the saccharine. I have been searching for years. all I have found is:" no one knows what the future is" Duh! "No one ever dies of MS.". "Jesus is the the Great Physician in the Sky" what I wanted was some honest answers on what to expect. my thanks and respect. I wish there were more people that could answer questions accurately. Q Reply
Ann, Community Member
6/19/12 9:24pm

Hello Diogenes....interesting name my cynical friend but your cynicism is warranted...the info is out there...but hard to find...glad you found this place and if you sort thru the knee jerk, evangelical, and out of bounds stuff, there is a helpful community here...I shared the hard to find and hard to accept  becainfor I had collected because I knew I could not be the only one who has witnessed the death of a loved one from MS. It's there on the MS society website, but you do have to hunt a bit....Ann

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Diogenes, Community Member
6/19/12 9:06pm
finally, I have found some straight answers without the saccharine. I have been searching for years. all I have found is:" no one knows what the future is" Duh! "No one ever dies of MS.". "Jesus is the the Great Physician in the Sky" what I wanted was some honest answers on what to expect. my thanks and respect. I wish there were more people that could answer questions accurately. Q Reply
alexandria, Community Member
7/18/11 10:53am

My patient has both MS and Alzheimers  for the past several months she has been getting more UTI  and pnemonia twice...not severe in either case....She is 83 and always seems to bounce back..after a few days in the hospital she comes home...she gets the very best of care at home.  My question is are we looking at what happens more at the end of life with the frequencey of these problems or is this just the progression of MS. She moves very little...is aware  and does talk... eats and drinks very well...she is up everyday in a hoya lift for at least nine hours...

 

Thank you for any information....Alexandria

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Lisa Emrich, Health Guide
7/18/11 11:12am

Hi Alexandria,

 

I'm not an expert on this issues, but in reading your comment I have a question.  Does your patient have a suprapubic catheter.  I ask because I've heard from other MS patients who finally had a SP catheter surgically placed, that they experienced much fewer UTIs.  Perhaps this is something to discuss with her doctors if she doesn't have one.

 

The pneumonia seems to be something which is more common in more advanced MS patients.  The inability to move around surely must increase the development of pneumonia.  Would that be correct?

 

In answer to your question - "are we looking at what happens more at the end of life with the frequency of these problems or is this just the progression of MS?"

 

I think that it could be some of both, but more so the MS.  Perhaps there are ways to eliminate the occurrence of infections, or at least try.  It's good to hear that she is responsive and interactive with those around her (talking and such). 

 

Please tell her that someone out her on the internet wishes her well.

 

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Ann, Community Member
7/18/11 4:54pm

dear alexandria,

 

According to the MS Society, "the most common cause of respiratory problems is loss of muscle strength and endurance" 

 

 

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/respiration/index.aspx

 

Some drugs depress breathing function.

Also for many, it is the aspiration of food, water and other drinks, and even salvia or mucus, that causes pneumonia. The food or fluid gets into the lungs and causes the pneumonia infection, which requires hospitalization. The person with MS may not be capable of doing big coughs to get out these fluids...may not even realize it has happened until pneumonia comes on.

n MS, the most common cause of respiratory problems is loss of muscle strength

unfortunately, UTI 's are very common symptoms of MS and with increasing numbers of UTI's, may require a cathether. However, this is a big operation with recovery time that is longer for a person with MS, than for one who doesn't, so don't let them release your patient too soon from hospital.

 

there is a lot of info and links to brochures by the National MS Society for caregivers on this website, about what to expect at the end of advanced MS...and you could get in a specialized nurse to evaluate the need for hospice care. your patient is old too...so some of these things happen to older people anyway, but the MS is just as likely to be the source.

 

http://www.nationalmssociety.org/error.html?aspxerrorpath=/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

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Kimmy, Community Member
7/29/11 2:30pm

Hi my mom has m.s. she was diagnosed 2 years before I was born. I love my mom more than anything in the world, she is my most important person. My parents are divorced and after my dad left my mom started having stronger symptomes than before. I have an older brother who is 3 years older who lives with us but I feel I can not trust him, for the reason he does not really help me take care of her. Its really hard.

I think my mom doesn't really know who I am whe she has an episode.

I just turned 18 a couple months ago but since after I turned 13 I had to be taken out of school because I got sick. I was "home schooled" from the begining of 8th grade until graduation. But really what I did could not really be counted as school because I was to sick to really do it. I was always an A student I played basketball softball swam, now I can't do any of it. It was hard to get out of bed even just to go the bathroom 10 feet away. The doctors couldn't find out what was wrong with me.

Now I just turned 18 and the doctors are thinking they might finally know whats wrong. You guessed they think I might have m.s.

But I don't want to get the test done. I'm scared I don't want to turn out like my mom. Who would take care of her. What would happen to her. She is getting so forgetful that I have to catch her from going outside because she keeps taking odd things (like a picture that was hanging on the wall) and saying that she needs to drive to the store.

I'm scared we moved 2 years ago and I don't know anyone hear because I feel to bad to go out.

I'm tired all the time from forcing myself to get up and taking care of my mom. I can't even ask my dad for help even in a small way because the women he left my mom for hates me, because I remind he of my mom.

Can I get advice on what I should possibly do.

I beleave in God but this feels like the devils work. Help Please!!!!

Reply
Diana, Community Member
9/12/11 6:17pm

Please get tested!  There are new and good treatments for newly diagnosed MS.  I am one of the lucky ones unlike my father.  I am part of a medical trial in the final stages and expecting licence imminently.

 

Hang in there, ask for help from everyone around you and do not keep quiet.  Sleep enough, keep mobile, stretch and drink plenty of water.  Make sure your diet has enough omega 3, get enough sun, this will top up your vitamin D.

 

You’re young and if it’s caught and treated early enough you may remain healthy and see few effects of MS.

 

Diana

Reply
S.G.ROTH, Community Member
8/ 6/11 2:46am

Hi Lisa.  I have MS and have had it for 12 years.  However, my youngest son was diagnosed in early Feb. and was gone due to complications at 27 in May 15.  Just 3 months later.  My daughter had it for about 8 years and asperated  in her sleep.  Now my oldest son was finally diagnosed but is already in worse shape then his brother who died at 27.  I personaly do not fear death.  Neither did my two children, how ever my son is. I believe it is because he has two son's who ador him and a loving wife. My children have watched me over the years and they are over joyed I am still here.  But they don't understand why there siblings are gone.  I have one other child who thank God dosen't show any symptons.  I am in bed 70 per cent of the time.  I sleep so much.  I do not understand why my children died so young.  I know age and the severity of it.  I just need to know so I can have my letters to each living child and my husband.  So that is my question Lisa.  I am 61 and am diteriating.  Looking forward to your response. 

 

Reply
Adrian K, Community Member
11/30/11 5:37pm

My husband has had MS for 32 years.  He was originally diagnosed with Chronic Progressive and has never been in remission.  For the past 2 years things seen to worsen and now he is on hospice with Lung problems (COPD) and they are saying it is due to the muscles and MS.  His constantly now sleeps,eats very little and the doctors says there is nothing else they can do that the MS is at the end stages.  in the last year he has lost from 195 and is now at 150.  His memory sometimes is confused and I am just worried sick about what else I can do for him

Reply
Adrian K, Community Member
11/30/11 5:41pm

My husband has had MS for 32 years.  He was originally diagnosed with Chronic Progressive and has never been in remission.  For the past 2 years things seen to worsen and now he is on hospice with Lung problems (COPD) and they are saying it is due to the muscles and MS.  His constantly now sleeps,eats very little and the doctors says there is nothing else they can do that the MS is at the end stages.  in the last year he has lost from 195 and is now at 150.  His memory sometimes is confused and I am just worried sick about what else I can do for him.

 

Reply
Pud, Community Member
1/12/12 3:51pm

how advanced is it when your speech and gait are both affected

 

 

Reply
Lisa Emrich, Health Guide
1/13/12 2:21pm

Hi Pud,

I'm not sure how a neurologist might answer this question, but it is my understanding that speech and/or gait can be affected at any time regardless of disease progression.  I think that disease progression is measured more by the severity of the symptoms and whether or not they ever get better.

 

We are not medical professionals here, but if there is something else we can help you with, please feel free to ask. 

Lisa

 

Reply
Dena Phillips, Community Member
2/ 1/12 9:39am

My daughter was diagnosed with MS about 4 years ago. She has had symptoms several years prior to the diagnosis. She has been in denial and has not taken her ms meds for the last two years. She has now followed up with another physician who wants to repeat a MRI before restarting her meds to see if more leisions have developed. He told her with her exam and her smptoms she was in the second stage of ms. What does this mean?

Reply
Dena Phillips, Community Member
2/ 1/12 9:39am

My daughter was diagnosed with MS about 4 years ago. She has had symptoms several years prior to the diagnosis. She has been in denial and has not taken her ms meds for the last two years. She has now followed up with another physician who wants to repeat a MRI before restarting her meds to see if more leisions have developed. He told her with her exam and her smptoms she was in the second stage of ms. What does this mean?

Reply
Dan Carrier, Community Member
5/14/12 1:58pm

I have a family member that thinks she has MS. Can you tell me of the symtoms of the last stages of MS? It sounds so terable...................

Reply
ABBY, Community Member
5/14/12 11:59pm

I HAVE A FRIEND WHO IS 29. HER NUROLGIST TOLD HER TODAY THAT SHE HAS PROGRESSED TO STAGE 2 MS TODAY... WHAT EXACTLY DOES THAT MEAN..I KNOW SHE HAS BEEN HAVING MORE EPISODE MORE FREQUENTLY AND THAT THE STERIODS ARE TAKING A TOLL ON HER.. THIS LAST TIME SHE HASN'T RECOVERED A NORMAL WALK...DOES THIS MEAN HER BODY ISN'T RECOVERING AS WELL AS BEFORE AND HER MUSCLES WILL NOT RECOVER FULLY AT ALL NOW?  ABBY

 

Reply
Lisa Emrich, Health Guide
5/18/12 3:47pm

Hi Abby,

 

It sounds like your friend's neurologist may have told her that she has progressed from Relapsing-Remitting MS (RRMS) to Secondary Progressive MS (SPMS).  Or maybe that she no longer has a "benign" case of MS. 

 

By your description, it sounds like she is having more relapses and is not returning to her baseline after each relapse.  Over time damage can accumulate and disability can also accumulate.  I'm not a medical professional, but it sounds like you've answered part of your own question.  Yes, I think that it means her body isn't recovering as well as before.

 

But the question of whether her muscles will recover doesn't have a good answer.  They might, they might not.  There have been MS relapses I've had where I didn't recover from some of symptoms for over 6 months.  And there are symptoms which are with me all the time, just varying in intensity when MS is acting up.

 

If your friend is having difficulty with her walking, I highly recommend that she ask for a referral to a physical therapist who specializes in neurology patients.  There may be things she can do to improve her muscle strength and coordination.  Physical therapy is a valuable experience and it has helped me to improve my gait (walking), strength, and balance.

 

Tell your friend not to give up.  There are ways she can continue to tackle her MS.

Reply
Lou Jo Chappelle, Community Member
5/26/12 8:48pm

I'm more interested in the late progression of MS.

Reply
Ann, Community Member
5/26/12 9:21pm

there is a lot of info on this page about Late stage/End stage MS. You have to comb thru them..

Reply
kelly hawk, Community Member
6/ 5/12 12:57pm

what are the stages of ms?

Reply
kelly hawk, Community Member
6/ 5/12 7:23pm

How do you know what stage you are on with ms?

Reply
mayflowerimmigrant, Community Member
6/12/12 8:09pm

I have been extremely ill for many years,  can no longer function much at all, 87 lbs.  have dog helps me , live alone feel ok couple days at time call em 1plus cane days.  usually 2 or in bed lost 80 lbs in 1 1/2 yrs docs no help hillbilly hell wont diagnose or put on meds too much money, i on medicare

Reply
mayflowerimmigrant, Community Member
6/12/12 8:09pm

I have been extremely ill for many years,  can no longer function much at all, 87 lbs.  have dog helps me , live alone feel ok couple days at time call em 1plus cane days.  usually 2 or in bed lost 80 lbs in 1 1/2 yrs docs no help hillbilly hell wont diagnose or put on meds too much money, i on medicare

Reply
loving wife, Community Member
7/ 5/12 2:07pm

My husband has been having hallucinations? for the past about 4 months.  At night he awakes and then wakes me up to find out who is in the house.  He says he heard the back door open and someone come - no one is there or has come in.

 

When he is sleeping at night he breathes normally and then doesn't for (it seems like forever) and then he takes a deep breath and so it goes.  He doesn't have sleep apnea.

 

He says he sees little men all dressed in green pruning our neighbors shrubs and trees.  I don't see them and then he will tell me they aren't there now.  He has been accusing me lately of tampering with his computer to monitor what he is looking at.  He has me searching his computer area for things that aren't there like little monitoring devices.  He has become angry several times because I tell him I don't know what he is talking about.  And then suddenly he is just his normal self.  Sometimes his answers aren't appropriate to the question.  Sometimes he just talks words, especially at night.

Reply
Sue L, Community Member
7/17/12 5:35pm

What happens more at end-of-life for a patient--sx of end stage MS.

Reply
Sue L, Community Member
7/17/12 6:10pm

What happens more at end-of-life for a patient--sx of end stage MS.

Reply
kim, Community Member
7/25/12 7:59pm

what happen at the end-of-life for a patient?

Reply
Adrian K, Community Member
9/ 7/12 5:14pm

I really wanting to know about the end of life for my husband.  He has had MS for 32 years.  He is now 74 and just released from the hospital with Pnomonia and UTI infection.  He was in the hospital and they put him on a venilator immediately the off then back in Intensive Care but he now refuses to go back on the venilator.  I was told by his doctors that he is terminal and is on hospic.  Can you tell me what else I can expect.  I care for him at home with sitters during the day.  I love him so much but do not want him to suffer.  When he was on the venilator tears ran down his face asking me to take it off and he wanted to die at home.  I am so worried, can you answers this question for me

 

Reply
Lisa Emrich, Health Guide
9/ 7/12 7:34pm

Hi Adrian,

 

I'm very sorry to hear about your husband.  Based on my limited understanding, pneumonia and UTI infections can lead to sepsis which can cause organ failure. It is the inflammatory reaction to the infection which leads to organs not receiving enough oxygen and nutrients.

 

Here are 3 booklets which you may find helpful regarding palliative and end-of-life care.  In the first one is mention of whether to be intubated and put on a ventilator as an end-of-life choice.  Some people would prefer to not be kept alive with a machine doing their breathing for them.  That's a very personal decision.

If your husband is in pain, ask the hospice workers what can be done to help alleviate some of his discomfort. 

 

One thing I learned when my grandmother was dying is that even if a patient has a DNR (do not resuscitate) order, when someone calls 911, the emergency workers must try to resuscitate the patient (according to the laws in most states).  This happened when one of my grandmother's home care workers panicked and called 911. It was against her wishes. 

 

Probably your best information can be provided by the hospice workers.  They are the ones who have the experience and depth of knowledge to be able to give you a really good idea of what to expect with your husband.  Sometimes people can be under hospice care for many months, sometimes just days. 

 

I really wish that there were a better answer I could give you.  You are in my thoughts.

 

Lisa

 

 

Reply
marlene tondini, Community Member
8/19/13 7:40pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
Sherry Nelson, Community Member
8/31/13 10:47am
Hi, I have not commented on anything in a long while, but you will be all right! I stumble around my house by myself all day, I do not use my wheelchair, unless I go out. Nor do I use my walker at home it stays up against the wall! I force myself to walk, I refuse to give in. But like I Sid when I am out in a public place, shopping, I use my wheelchair, I am no crazy. I have broken a knee and an ankle, and it ain't pretty, lol,lol! So I know when to.say when! Lol lol :). Reply
marlene tondini, Community Member
8/19/13 7:40pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
marlene tondini, Community Member
8/19/13 7:40pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
marlene tondini, Community Member
8/19/13 7:40pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
marlene tondini, Community Member
8/19/13 7:41pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
marlene tondini, Community Member
8/19/13 7:41pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
marlene tondini, Community Member
8/19/13 7:41pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
marlene tondini, Community Member
8/19/13 7:41pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
marlene tondini, Community Member
8/19/13 7:41pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
marlene tondini, Community Member
8/19/13 7:41pm

i am on fast track i am 67 , diagnosed in jan 2010 was slow then april this year eye sight changes, feel 8-9 feet tall , i am 5 ft increase to no problem walking to suddan rapid decline, cant get in tub/shower or fall . every weird symptom i get it might let up a day or two, right back. saw there are 3/5 different ways m/s can go. i am in fast type . how long before i cant take care myself??

Reply
marlene tondini, Community Member
8/19/13 7:46pm

if i am 67 yrs old and symptoms came fast right before 2013, before that walking ok now hard balance, bladder changes, eye "vision" problems, not hungry, foods give me direrreh WILL I PROGRESS FAST, TO DIE, HOPE SO

Reply
Curious d, Community Member
12/ 4/13 10:33pm
What are the later symptoms of MS also what are the worst symptoms? Also, if not treated does it get worse? Thank you in advance for your response. Kind Regards, D Iles Reply
supaguy, Community Member
1/ 4/14 7:52am

Huh!

 

So, "Multiple sclerosis itself is not considered a fatal disease, ...."  Wow, I won't call that a stupid statement, I'll call it a plain lie.

 

So, when somebody get gets bitten by a rattle snake, it's not the rattle snake that's killed them , it's the internal bleeding or the kidney failure or cardiac arrest is it?  Alzheimer's, MS, MND and a whole raft of deseases are not instantly fatal; they are slow killers. but killers none the less.

 

There's loads of stuff about God on this thread.  As it happens, I am not an atheist; I pray; I believe in God.  I also believe that if I got bitten by a rattle snake God would not want me to just lay back whilst the venom ran through my veins.  Yeah, if I got bitten, I'd be praying to God like there was no tomorrow; I also be praying for anti-venin too!

 

Now I bet you're asking whether I have any idea what it's like to have PPMS.  Well, I do have quite an idea: I live it every day.  Every day I fight MS.  Bye the way, I still work and still pay UK higher-rate tax. (5 years, before you ask).

 

In my opinion, on of the biggest enemies of people like us is actually "Acceptance".  Professions that are supposed to be fighting for us have gone the wrong way and organisations that are supposed to be working for us have just lain back and accepted what those failed professions have said.

 

I am not gonna bang away here on something that I have said elswhere before but I will leave a couple of links:

 

http://www.youtube.com/watch?v=EpMvDe8-qsM

 

http://www.cpnhelp.org/why_ms_society_and_its_me

 

It is true that with MS there is such a thing as the "End stages".  By deffinition, when it's too late then it's too late; that applies to Alzheimer's, MS or snake bite.

 

I hope you look at the links and I hope that you look further.

 

Good luck.

 

G

Reply
Merely Me, Health Guide
10/16/08 5:31pm

Hello

 

I have to tell you that whenever I see this type of question I cringe.  Why?  Because I have MS and I ain't ready to die nor do I wish to think about dieing. 

 

But sometimes it is best to face your fears head on and find out what the truth is is you can find it.

 

First of all you can read my first attempt at answering this question posed earlier...here.

 

I am going to also give you a quote that I have heard given repeatedly in the literature:  "A small number of patients have malignant MS, which is marked by a rapid decline that leads to disability and possibly death. MS is rarely fatal, however, and most people with the disease have a normal life expectancy."  ( Ed Zimney MD, Health Talk Medical Reference.)

 

The literature that I have read seems to be in consensus that you do not die from Multiple Sclerosis.  What you can die from are some of the complications arising from having MS.

 

What are those complications?  Usually respiratory distress or pneumonia.  Here is a study detailing the causes of death for people who have MS.  This study states that:  "Median observed survival time was 38.0 years from symptom onset."

 

Now if you really want to get into the details of what the end of life might be like for someone who has MS here are some articles you can pursue.

 

This article is about a man who lived in a hospice who had MS and this is the story of his circumstances.

 

Here is a story about a woman who died from a rare form of Primary Progressive MS.

 

And here is a question posed to a doctor about a woman's mother who is in her later stages of Multiple Sclerosis and she pretty much asks what you are asking.  The doctor answering pretty much confirms what the literature says...that you don't die from MS but rather from complications arising from MS such as blood clots or infections.

 

When I was first diagnosed I wanted to know all of this too.  I wanted to see the worst case scenarios.  I feel a lot more confident knowing that most people live to near life expectancy despite having MS and many people who have MS are not severely disabled by this disease. 

 

I would much rather focus on the knowledge that Multiple Sclerosis does not mean that life is over.  I will leave you with this inspirational young man's message re-affirming this very message. 

 

 

 

 

 

 

Reply
JohnCE, Community Member
12/29/08 3:31am

As stated in the two other post MS is not a fatal disease. It is the complications that MS causes to a person that causes the demise of oneself. There are so many possibilities that one could list, it is not practable to do so, since every case is different. On the Kurtzke Espanded Disability Status Scale (EDSS), it has level one can use, HOWEVER it is just a guide NOT THE RULE. It goes from 0.0 to 10. At level 8.0:Essentally Restricted to bed or chair, or peraambuled in wheelchair, but may be out of bed itself much of the day; retrains many self care functions; generally has use of the arms. 8.5; Essentally restricted to bed much of the day, some effective use of the arms, retrains some self-care functions. According to multi-sclerosis.org/expandededdissabilitystatusscale.html  They years spent at level seven are approx. 4 years; the years spent at level 8 is approx. 2.75 years and at level 9 is approx. 3 years. For a grain of salt, some of the top neurologist rated me in my second year of MS at 8.0 to 8.5. That has been 9 years ago. There is not a preset toe tag on MS, you treat the symptoms and go on. It is a hard disease, I started of viral realated MS, secondary progession from day one. You keep on fighting and hoping. Some of my neurologist have stated that they have has patients with MS, where it went into a remission, however rare it happens. Keep the faith. Mircles do happen..GOD BLESS...John

Reply
Diogenes, Community Member
6/20/12 8:36am
No one dies of MS. It is the complications at the end that are fatal. That is like saying no one ever dies from falling out of an airplane. It is only ehen they stop falling when they reach the ground that serious complications occurs. This is a distinction without a difference. The truth is is that without the MS, without the fall, there wouldn't be the fatal complications. Reply
Alice, Community Member
3/23/09 2:22pm

My sister has had MS for about 25 years now she has really fought a good fight with it! But of course she has been bedridden for 10 years now but now she has a fast heartbeat of 200 or more and has a fever and the nurses has a hard time getting a blood pressure ! What can we expect now with her?

Reply
Sharon Liddy, Community Member
12/20/10 2:42pm

How will I know when my husband's Progressive MS is at a palliative stage?

We do not wish to hospitalize him again

Reply
Ann, Community Member
8/ 6/11 12:10am

Progressive MS is always at the Palliative Stage, for palliative care addresses the needs of people with illnesses that cannot be cured, that cause daily symptoms, complications, frustrations, extensive care and pain and a plan for treating any of these problems. Treating, not curing. It is a team approach, with doctors, nurses, home care aides, and family members who are caregivers, finding a plan to keep the person with MS comfortable, healthy, and even happy and at peace.

 

Palliative care is all about making the person comfortable as possible..

 

Hospice care is end of life care...specialized nurses and volunteers come inot the home or hospital or nursing home to attend to the physical, emotional and spiritual needs of the dying person...so while it is a form of palliative care too, it is different....

 

Reply
AGSerra1, Community Member
12/23/10 10:56pm

I ask this question to my doctors with each new dx on my MS aside from asking myself and God why and what and when  .... while I have heard of many who repeat the  mantra of this will not defeat me so many lose faith and hope of this ever changing disease.

 

I may not make too much sense any more , as there was a time I could write up a storm and while I am in the mildest form of MS at 9 yrs. , the disease mutates and changes so sure it is easy to say MS does not kill us but we do not die from the disease but rather "complications" but as I see it it we do die from this disease ..

 

I am 53 and as I stated 9 yrs. now and finding that even though there are new treatments , new discoveries and new eveidence there is nothing new to answering this question ..

 

Each case is different, each case is not easy to hear of how a person dies from MS and after hearing most stories and losing a schoolmate from MS I cannot say how or what to expect but rather focus on living out my life with dignity and so I believe that we all know the deal, it just when should we stop fighting and that is when hospice or some other agency that can help you handle and plan a course that fits you best ..

 

I pray you find that course , I pray you hold onto the thought that you are not alone , you are never alone and that your feelings are justified and that you may never get the right answer here , I pray you can just take time to breathe it all in and remember you are loved ..

Reply
Ann, Community Member
8/ 6/11 12:18am

I agree with you...MS can and does kill people...it is splitting hairs to say it's the "complications". The complications wouldn't be there if the MS wasn't there. 

 

You don't hear anyone saying "no one dies of cancer...they die of the complications..."

 

So a realistic approach is good. MS may very well not kill you, but if you have primary progressive and are getting worse fast...it may...

 

Arm yourselves with info, get the doctors to help you a treatment plan, a plan to remain comfortable and pain free, and help your caregivers help you to find a plan to enjoy what you can still enjoy...

Reply
Dorrain, Community Member
2/13/11 10:36pm

pneumonia, UTI, person cannot use limbs, have to be fed, you can understand them when them when they talk, sometimes confusion, cannot swallow

 

Reply
Lau, Community Member
5/15/11 12:54pm

I cannot walk, can't easily swallow. I am about to launch 4th book. I can be understood - have permanent catheter, have had ms since I was 16. No confusion. My Service Dog is great.

Reply
Dorrain, Community Member
2/13/11 10:38pm

cannot use limbs, sometimes confusion, cannot swallow, pneumonia, UTI

cannot understand what they say

Reply
Ann, Community Member
6/15/11 8:31am

 

Hello to all who have asked: What is End Stage MS or what are the stages of advanced MS, what is advanced MS, or what are the signs and symptoms of advanced MS, how do you know when a person is nearing the end of their life due to MS?

 

I am sorry to hear you have to be asking this question, but to help yourself and loved one, I do hope that you will look at the link below and print off that brochure and really read it and take the actions you need to help your loved one. It is not easy to face this and the information may be upsetting to you. 

 

http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

 

On this page, please find the document listed below the main article and video, called "Advanced MS: a guide for families" .

Print it off and refer to it often as things change. 

 

Make sure you, the family, and all caregivers, and even doctors are aware of the signs. Make sure you and caregivers know when you need to call the Doctor or 911, and when to get more care, "palliative" or "hospice" care (both are end of life care to make the loved one comfortable and pain free). You may want to learn how to use a stethascope to monitor breathing problems

 

for those in the UK, there is a similar link:

http://www.mssociety.org.uk/downloads/MS_Essentials_16_Support_for_people_severely_affected_by_MS_-_web.8df5f599.pdf

 

Read both, as each one has important info.

 

to read more about Palliative care:

 

http://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/palliative_care.html

 

signs: in addition to all the typical MS symptoms of stiffness and being bed or wheelchair bound, what makes it end stage is new or worsening

problems with Breathing, Swallowing, talking, worsening bladder and bowel problems, having a permanent catheter, pain patches such as morphine or fentanyl patch, disoriented, lack of focus, crying out in the night, not sleeping through the night, needing more and more from you because they are uncomfortable, such a drink, repositioning, more pain medication. Changes in mental attitude, worsening depression...

 

You may be seeing these things now. Don't ignore it. You can help by seeking "palliative care" which means care that makes the person more comfortable and pain free. This is also what "hospice care" means. It's all you can really do for advanced MS, even if no one is calling it "end stage".  It could be weeks or months or tomorrow. 

 

Reply
Lisa Emrich, Health Guide
6/15/11 11:00pm

Ann,

Thank you very much for sharing this information.  Hopefully this material will help patients and their families deal with what is a challenging time of life with MS.  The link to the downloadable pdf didn't work for me, but I found it at MS Essentials 16: Support for people severely affected by MS.  Thank you.

 

Reply
Ann, Community Member
6/16/11 6:05am

yes, that is the brochure ....I'm sorry the link didn't work, so i will have to look into that and re-post, as I found it hard to locate on the MS site when i was first looking for info. 

Reply
Ann, Community Member
6/16/11 6:55am

Hi Lisa,

 

I posted a few links for people looking for info on Advanced MS and end of life or end stage MS.

 

Once you get to the page, which is a main page for "Advanced MS", please see "Resources"  (in green box on right of screen)--- there are 2 guidebooks you can download with PDF : "Caring for Loved Ones with Advanced MS", and "Financial planning  for a life with MS".

 

Also on this same page are lists of info under "related pages" and "related documents".  There is all sorts of info there that people may need. 

 

 

I am reposting the link, so people can find it easier. This link below will take you to all of the above info. 

 

cut and paste into your browser if you can't click directly on this link.

 

http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

 

 

Reply
rem22, Community Member
7/11/11 2:30pm

My wife is now 47, living with this MS for many years.
Before, she was a very active person, running, smiling, having fun , travelling: she was living a normal life. At 33 years old she gave birth to our son, and her situation started to change rapidly.
We knew she had that disease - she has been hospitalized 14 times before giving birth to our son( -who is now 14 years). She even breast feed the baby boy. Then , after a while, her health started to deteriorate rapidly, ( with all the most modern medicine I believe she has), nothing help.
Day by day I watch her, watch her health deteriorating even further . I am watching her in the pain, she cant sleep, cant even pour a glass of water for herself. Everything she needs, some one has to do it for her, or I have to assist her in everything. She cant even take a pen to sign a document and that is some one with a Masters/postgraduate in Arts.
In the last 3 years we have managed to get her to hospital just in time..!!!
Then again, all brings an atmosphere in the house - not the best one. The boy never had a mum to pick him from school or to go to the parents meeting; not her fault! I have to do everything.
Looking at some one screaming in pain is really painful - when you witness that day b day, yes, you do curse the whole world as you really don't know where the end is. It is even more painful for the kid. I cant accept this fact that believing in god will make things better, no, no !! I don't want to go into that . I just can't understand how much a human can or should suffer, for how many years can you watch a human/your wife suffer so much.
You cant even go on a holiday as a family, as she refuses and cant . You cant even sit together in the evening for a talk - she just cant or has not got the strength to stay late.
She is now 47 years, maybe a miracle will happen, things will get better. MS might not kill one, but I am witnessing how it is torturing some one day day, moment by moment and you are just helpless .

Reply
Lisa Emrich, Health Guide
7/18/11 11:20am

Hi rem,

 

I'm very sorry to hear that your wife is in so much pain.  Not being able to control her body must be endlessly frustrating.  And you must be such a strength for her over these past 14 years.  Being the caregiver is not an easy task and MS really does reside with the whole family.

 

Please visit the website of a friend of mine, Patrick.  It is Caregivingly Yours and he has amassed many resources.  His wife has MS and they raised a daughter.  Read his blog and see if he has any information which might help you and your family.

 

I wish you well,

Lisa

 

 

 

Reply
Ann, Community Member
8/ 6/11 12:22am

great blog for caregivers of people with MS! thanks for sharing this...

Reply
rabbitraiser2, Community Member
8/ 5/11 7:03pm

Dear Rem:

My Husband can relate to exactly what you are saying!  My husband watches me in extreme Pain constantly, everyday. I am very fortunate that my children are older and moved out of the home, thank you Father, they do not see my Pain. That would kill me, if they did see my pain, I don't think I could take that mentally..honest.

I live here in beautiful Hawaii the Weather is just right for ME here. Not too hot ..not too cold ...just right.  The pain that your wie is experiencing feels like she is have extreme BAck pain all over again..like ...Labor pains.. What can you do?  Not much other than ..offer her a heating pad for her neck and back and make sure she sees the best neurologist. Topamax has helped my major headaches ..but your taste buds will disappear ..you have to get her to eat! You could always offer her a nice Hawaiian Vacation and get her away from the Hot Weather!  That might work!  :)

You are right MS does torture Me every day...only if I let it torture Me!  I refuse to lay in the bed helpless...I have a farm..yes, here in Hawaii and I get up and feed the animals..everyday! I feel like it is therapy for me ..does your wife like a certain pet maybe? I can think of more later and I will write back soon

RabbitRaiser2

 

 

Reply
Ann, Community Member
8/ 6/11 12:01am

MS is a very hard disease for the person who has it and the caregivers and loved ones of that person...With a life limiting disease such as MS, the person needs Palliative Care. This is care that does not cure the disease, but lessens the symtoms if possible, and foremost is pain management if the person has chronic pain or even occasional but severe pain. MS pain takes many forms and some of the pain is excruciating, some can be addressed with tylenol. No one with MS should be living in so much pain they are screaming, for there is pain medication available. It can be a scary thing to need strong pain medicine, such as morphine and fentanyl. But the alternative, of living with horrible pain is scary too and it's not fair to the person... MS Pain may require strong pain measures. She should see see a Pain Management Doctor. 

 

Also, non medication pain management exists such as guided imagery, meditation, and massage. 

 

Please please discuss palliative care, pain management, and hospice care as well. Brining in hospice does not necessarily mean the person is dying. Hospice care is a form of palliative care, for people with incurabel illnesses, such as MS, who need extra physical, emotional, and spiritual care. 

 

MS is a horrible disease and you have told how it has ruined her life and the impact on your family...She won't go on forever....MS does kill people. And extreme pain can be one of the signs life is ending. 

 

Her Doctors need to be on her team, and address this pain and address the end of life signs with you both...

 

The National MS Society has a lot of resources for the families of the person wiht MS, about managing the illness, managing pain, how to talk to doctors to get the help you need, etc......have a look...I have posted this info many times on this website, so look back for my posts or just go to their website and look under "resources"....I hope to hear from you soon, that your wife is not in pain....

 

It sounds like you are struggling without much outside support and that is a very heavy burden...you need respite care, so that you get a break....the MS society here in the US,  pay for a few days a year, for a nurse's aide to come in and care for the person with MS, so the caregivers get a break...

Reply
rem22, Community Member
8/ 8/11 4:16pm

I was before working from home - then I took a fulltime job , during my absence we have someone fulltime, plus three times a week a nurse coming over for rehab.

She is a hell of a good manager with one phone she gets things organised, even her favourite hairdresser is around anytime. This , she can still really do - but being unable to do what she used to do in the yester years - is probably even more painful than the physical pain itself. The economic aspect is not really the big issue.


I really have plenty of respect to all those who are fighting and struggling against this MS, to live the life at best. "She never gave up that maybe one day just as this terrible disease came, it might just go away." Even over the phone she never gave the smallest sign that she is suffering - what a great spirit! She is always in the best of mood to cheer others.


What is most incredible - maybe few notice that; are those KIDS (not only mine) who are always ready to help - mum or dad. They never refuse.


Many kids will missed their film or ther activities, telling their friends they have to be home, some are not able to go on holiday 'cause they have or prefer to be with their parent - and they can really cheer up those who are suffering.


I have a feeling that those kids are the real champs.

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Lincoln, Community Member
6/21/11 11:12am

I have a sister, currently living in a very caring nursing home, that was diagnosed with MS in 1987. She had a very positive attitude, up until a recent episode with he doctor that hadn't seen her in two years. He increased her meds, causing her hospitalization, we think. She has an appoinment with a new neurologist in July. Since this event, she sleeps alot more and even while she's driving her electric wheelchair. Currently she's experiencing pain in her left side and stiffning of the body. An x-ray was taken today and we'll get the results 6/22/11 at her care conference. My question is, if this is progression, what are we to expect in the future? Also, how should we approach her on the subject of final stage MS? Her faith in God hasn't wained as far as I know and we'll talk some more on the subject.

Reply
Lisa Emrich, Health Guide
7/18/11 11:28am

Hi Lincoln,

 

I hope that the visit with the new neuroloigist has gone well (or will go well if it hasn't happened yet).  It sounds frustrating that new or worsening symptoms have occurred after the other doctor changed up her medications.  Was she having problems beforehand to need changes?

 

Regarding the issue of end of life, Ann has provided lots of great information and links to other resources.  I recommend that you check those out if you haven't already.

 

I'm not sure what to say about approaching the subject of end of life with your sister.  Perhaps it would be good to discuss the possibilities with her new neurologist.  Does someone else (maybe you) have medical power of attorney for your sister?  If someone does, perhaps they should be included on discussions of health in the future and your sister's desires should the time come that she can't speak for herself.

 

I know that my mother has shared want she would want and not want should the time come.  I appreciate that we've had this discussion well before the time that it may become a reality.  Thinking ahead is usually a good thing even when your faith is strong, espeically when your faith is strong.

 

Please let us know how the new neuro visit goes.

Reply
Ann, Community Member
7/ 4/11 9:13am

This thing everyone says, "MS does not kill you, the complications do", is a phrase I would like to see eliminated from MS talks or at least put in perspective. MS can kill you because at the end stage, it is shutting down every single thing we need to live:  eating, drinking water, breathing, being able to eliminate. Pain, vision and speaking problems all make end stage MS an isolating and scary time for the person and their loved ones. It doesn't have to be that way if you take some steps now.

 

While most MS does not get to this stage and the person will have a normal life expectancy, for those have been told they are at "end stage" or have "advanced" or "severe" MS, they need info. If you've been told this, take notice, for it is serious for you. 

 

Signs: while there is no definitive timeline and not everyone will have all of these things, what you can expect at "end stage MS" ( in addition to all the typical MS symptoms of stiffness, vision, speech problems,  being bed or wheelchair bound) is new or much worsening problems with:

1. Breathing- shallow and ragged sounding, labored, many bouts of pneumonia

2. Swallowing problems that cause choking on food, fluids, saliva (and this can cause the person to inhale (aspirate) of food and fluid into lungs which in turn causes "aspiration pneumonia"

3. Worsening bladder and bowel problems, having a permanent catheter. 

4. Pain starts or becomes much worse, and the person needs strong pain meds, such  such as morphine or fentanyl patches. There can be very dangerous drug interactions with the MS drugs, anti-depressants, sleeping pills that can slow the heart and breathing to life threatening levels. Drug addiction can result as well. 

5. The drugs and/or the MS make person more disoriented, lack of focus, crying out in the night, not sleeping through the night, needing more and more assistance from you because they are uncomfortable, need a drink, repositioning, more pain medication. 

6. Changes in mental attitude, worsening depression, forgetful, worried, anxious, confused...

7. Having a feeding tube.

8. Needing a respirator.

9. Needing 24 hour care.

10. Many more trips to the emergency room and hospital stays for any of the above problems, and/or infections, low electrolytes, low blood oxygen, low pulse, and more.

(I recommend that all caregivers and loved ones learn to take pulse and listen to heart and lungs) 

 

I know some with Primary Progressive go on for many years while others have died within a year of the diagnosis. Over time, some people who had one form, are reevaluated to having Primary. As everyone comments, MS affects people differently, even when it has same diagnosis of form. This is partly because some are not diagnosed correctly initially and partly because of the individual nature of MS. 

 

I am very happy that most people do not get this form of MS and do not end up dying from MS. However, to gloss over the reality for those who have a "end stage" or  "severe" and "advanced" of MS is a disservice to them. They need info so they can decide for themselves how much they want to prepare for death. Most people just keep going on as usual, whereas others want to have certain talks or have certain experiences while they still can. Not to look at this or talk about the end, may deprive the person of the extra care, such as more assistance or hospice, that may be needed to make them as comfortable as possible. 

 

No one wants to face or dwell on this, but the reason you have to look at this info is because if you or a loved one has "advanced" or "end stage MS", you will need a strong advocate and the caregivers and loved ones need learn how to make that person more comfortable, spend more time with them maybe looking at photos, listening to music, bringing in a pet, or reading a book aloud, things from the outdoors, such as fall leaves, or beach sand, or a wildflower, things they have not seen, smelled or touched in many months or even years. Or maybe they want to take a trip even if it will be hard to do, or do something wild and crazy!

 

And you'll be amazed at what you can learn about life from the loved one with MS. 

 

Many times, the person with MS has come much farther in their journey of acceptance than those around him or her, and they may welcome extra attention. Some may not, let the person guide you, but try…even if the person resists at first. He or she may already feel "like a burden" and not want to "impose". But this can be time well spent that brings meaning and reflection upon a life together, the present moment, and the future, for both the loved ones and the person with MS. 

 

I am not  in the medical profession, just a person who was there while a loved one declined and passed away from MS after a 10 year battle with Primary Progressive. I hope this will be of help to those who are wondering what to expect and what they can do to help. 

 

I wish you all strength and compassion for yourselves, your loved ones and caregivers on this most difficult journey.

 

I think you will find answers to more of your questions at these links. 

 

http://www.nationalmssociety.org/about-multiple-sclerosis/living-with-advanced-ms/index.aspx

 

On this page, please find the document listed below the main article and video, called "Advanced MS: a guide for families" .  

Print it off and refer to it often as things change.  

 

for those in the UK, there is a similar link:

http://www.mssociety.org.uk/downloads/MS_Essentials_16_Support_for_people_severely_affected_by_MS_-_web.8df5f599.pdf

 

Read both, as each one has important info.

 

to read more about Palliative care (things to make the person feel better, but do not count as a treatment or cure) :

 

http://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/palliative_care.html

 

Reply
Dorrain, Community Member
7/26/11 5:35pm

They have a hard time swallowing, cannot move any limbs, or talk

Reply
brenda, Community Member
8/27/11 7:11pm

My daughter has been diagnosed with relapse remitting ms stage 2. she is now having diffulty in swallowing and recently in spelling. she previously was an excellent speller. she is a nurse and asked me to find out if she is progressing perhaps to a stage 3. is there such a thing. she had been under alot of stress and i was wondering if she is perhaps approaching an ascerbation.

Reply
Ann, Community Member
8/27/11 9:48pm

I am very sorry to hear your daughter has MS. All of us who have been touched by it, ourselves or a loved one, hate it...

 

I personally have not heard of all these stages, but if she truly has relapsing remitting, then she is not at an "end stage". The MS has to go from relapsing-remitting to Primary Progressive before "end stage" (of life) is even discussed...she may need therapy for help with swallowing problems or thickeners added to foods and fluids so that they don't get accidentally aspirated into lungs...

 

While swallowing problesm could could go away during remission, it's a new thing for her, so she should go back to her MS doctor. Swallowing problems can lead to aspirating foods and liquids which can cause pneumonia which can be life threatening...Don't ignore it...let the Docs know...take it from there...

Reply
blyle4, Community Member
3/ 2/12 6:34pm

A couple weeks ago,a paramedic characterized me as "end stage MS", which sent me here, courtesy of Google. I started showing signs of MS when I was 23, was diagnosed at 26, and that was 30 years ago. I have been catheterized for nearly 20 years, have a baclofen pump, a mediport, and the last year of feeding tube. I have lost all voluntary function below the neck, except breathing. I did aspirate last spring, but thank God I was able to get off the respirator after a month so I am currently dictating this letter using Dragon Naturally Speaking. I expect to lose my voice and my senses in the next few years, although dying of an infection would be kinder as that isolation reminds me of a very depressing short story. For some reason, psychologists and chaplains seem to think I am still cheerful and sane.

The only near family. I have are my sister and my niece, so I suppose part of it is putting on a good face for them and to giving them some illusion of moral support. I do take some consolation in my Christian faith. I have never expected God to spare me or cure me, but he did promise that if I had faith I would have a not unpleasant existence after death.

This is how I have always explained it to my atheist friends: I decided in my teens that if this life is all there was, there was little purpose in life and less in morality, which I found uncomfortable. I studied Physics at University and noticed that the more we knew about the universe we might be getting closer to answering "how?", but no closer to answering the question "why?". God seemed as likely an answer as any.

I looked around for God and Protestant Christianity seemed to make the most sense to me. Besides, having put my faith in the Lord, I can anticipate an eternity with most of my family and many other good people. That ain't too bad.

Reply
Ann, Community Member
3/ 7/12 7:33am

Dear Blyle,

 

My first reaction to your post was why was a paramedic telling you this? Usually it's your doctor who makes this sort of determination and you would know all about it.

 

Be that as it may, it sounds like you have made peace with MS as best as you can.

 

My brother passed away last year after 10 years of primary progressive MS. Some months before he died, he told the family he had "end stage MS", but we didn't really understand what that meant, for we had heard for so many years, how MS doesn't kill you, how you can go on and on. MS does not take the lives of everyone who has it, but it does for some and I wish that was better understood by everyone.

 

I wish I had understood it for I would have been able to be more of a help and comfort to him. I would have been there in a different way other than just visiting, helping with chores around the house etc. I think I would have done things like looked at our childhood pictures together, talked about the past, talked about his death that loomed in the future, and maybe done more things together that he liked to do, like listen to music, or look at nature and more.

 

Like you, he put on a good front, saying what a great life he had, and many people commented on how seemingly chipper and upbeat he was. And he was, but he also had some very sad times where he was in despair.

 

So I hope that the MS community will begin to see that MS can indeed take a life, and not hide our heads in the sand about it, deny it, and thereby deny ourselves and our loved ones, the chance to be together when togetherness is most needed.

 

 

 

 

 

 

Reply
prince7022, Community Member
3/ 7/12 5:04am

I read lauras story back up top close to the beginning of all the answers to the question. Let me tell all of you that as I sit here, I am crying so much because it is more difficult to see someone that you love so dearly have to be taken over by this condition rather than you go through it yourself so that this person that you love doesn't have to experience this. I would ask God to give me this disease a thousand times before I let this person go on with this, but there is only so much that I can do and so much limitations as a human being at this moment and hereafter that I can do for this person... I dream of one day becoming a doctor or a scientist to study and find a cure for this. I can sincerely say at the very least that it is heart breaking to see someone else go through what you rather go through yourself in sacrifice for that person's life. It is extremely difficult and it breaks my entire heart into pieces as we go through this together. I know that love is more powerful then anything else in this universe and with the hopes that one day, maybe in a million years, we can all wake up to something that represents that love purely. I've read some of the stories and answers and they are very touching to my heart and I appreciate the thoughts and comments from all of you in regards to this question. It just helps to hear what people have to say sometimes especially when sharing their experiences with one another. No single person has too much power, but together, each and every single one of us, can and will make a difference in the years and time ahead. Don't ever lose faith with your heart and soul so that we can continue to find a cure for ourselves and the ones we always love...Bless all of us and bless those who love one another....I love all of you. I'll see all of you one of these days in heaven. All of you. Take care and thank you. TOGETHER WE CAN ACHIEVE!!!

Reply
Navin, Community Member
3/21/12 1:38pm

Hi all,

Firstly, I would like to mention few complictions which I believe appear in the final stages of MS.

1- Lose of movement in the limbs which will make you bedridden (Use an Airbed if you are bedriden and change your position every 2 hours to avoid bed sores),

2- Forgetfulness and Thinking of things that happend long ago like happening now.

3- Difficulty in swallowing food or water.

4- Lose of proper diet leads to several complications like low sodium levels lowering Blood pressure and if diabetic leads to fluctuated sugar levels.

5- Once swallowing food becomes difficult and if you force- food may enter the trachea leading into lungs rather entering esophagus leading into stomach.

6- This will lead to blockage of the lung airways and makes it difficult to breath.

7- At this point you may need a Trachestomy done, to clear of the secretions form your trachea and clear you airways constantly, to help you breathe.

8- Urinary tract infections may arise if you lost sense of urination.

 

These are few complications I saw personally in my grandmom in the order who is suffering with MS and is now in her final stages. To know more about our story read further. 

 

I am feeling really sad and awful after reading all the  material and stories of the patients and their families suffering with MS. I would like to share my story with you all, since this very different from all yours and cannot stop myself sharing it. The reason I said "Awful" is because I have my grandmom diagnosed with MS few weks ago. She is 65 y/o and has been having all the symptoms mentioned in the various MS related sites and even in this blog. She was facing these symptoms since approximately 8 years and was taken to several well-known doctors (including neurologists) in the city (Luckily, this city is not in the United states. I am from India) and none could have diagnosed it. Every one told she had some sought of vitamin deficiency or some other lesion in her spinal cord which is pressing against one of her arteries, which is not letting the blood to circulate into her lower limbs and this why she is having those kind of flare-ups. 8 years ago I was 18 and I had no knowledge about MS, But I was constantly thinking that there will be a cure for her illness and I will find it out if the doctors cannot. I am 24 now and currently am an investigator in breast cancer. I always had this thought about my grand mom since I was away from her and started researching on her symptoms. With the help of my colleague and a dear friend, unfortunately, whose mother is also suffering with MS, I figured it out that my grandmom may be having MS. By the time I realised the facts and have done my research my grandmom fell sick. I came back home immediately and have been taking care of her since last month. She is bedridden and cannot swallow her food nor move any of her limbs. She was the one who raised me since my childhood, as my mom was busy with her work, and now she hardly recogninzes me when I returned for her. I am feeling very bad as we were not able to diagnose her problem properly earlier. This lead to many misunderstandings between my grandmom and my family members. At times we even believed she was lying about her pains and flare-up's since none of the doctors really told if there was any serious problem. They would always leave us guessing saying this was a rare situation. I am feeling sopo sorry for my grandmom right now and I cannot stop tears rolling down my eyes. She is in ICU right now while i'm writing this with Ryles tube feeding, Trachestomy done to remove the secretions from her lungs, Urine collector, and a Big bed sore which needed surgery to remove the necrotic tissue. She is suffering with infections at the bed sore wound site , in her lungs, and in the urinary tract. She cannot utter a word nor recognize any of the family members. she would  only give a nod for anything you ask. She is diabetic so the infections keep coming and the wound is taking really long to heal. We have started Sub-atmospheric pressure therapy for the wound since we heard it will help in faster healing and avoids infections. Doctors said that they cannot do anything at this stage. Although there are some medications like Interferons we could use, we are not in a position to afford it. But, I am still strong and i'm not loosing any hope. We treated her with Immunoglobulin therapy a while ago on my request and it helped my grandmom to recover a very little. She atleast recognized me after the therapy. But still it did not improve any of her physical condition. We are planning to get her discharged from the hospital and give care at our home. I hope she will get better, BUt I don't know what to do when the condition gets worse. I have no clue, all my family is in a helpless situation. I am feeling really awful about it. I Know i'm writing too much here but i'm not able to control my emotions and can't stop writing about this. I love her soo much...if it was'nt her I would'nt have anyone who encouraged me by saying I could achieve anything in this world if I have the real concentration over things. she is a strong person and even after soo much suffering she would not utter a word or show the pain. I am sorry for not able to do anything to make her condition better. But I will not stop having hopes. I will do whatever it takes to make her feel better until her last breath. 

 

Navin.

Reply
Ann, Community Member
3/23/12 5:40pm

hello Navin, your story of your grandmom not being diagnosed happens all too often....people with MS have a hard time getting answers and are told it is all in their heads etc...so now she is in very bad health because it was not treated early and has an agressive MS...I am so sorry to hear of this for you, for her, for her family..but you are right...it sounds like she is in the end stage with all of things that are going wrong....Despite this, she may get well enough to recover from this acute stage and with help at home, be able to come home....all you can do is make her comfortable and tend to the sores and keep all the equipment working properly and clean....if she doesn't get better and if you have it in india, you need hospice care to keep her peaceful and pain free as she leaves this world....

 

You sound like such a loving grandchild...be with her and she will know it and you will all be at peace when the time comes.....Ann

Reply
Navin, Community Member
3/24/12 1:06am

Dear Ann,

Thank you for the kind words. I understand that misdiagnosis happen often and we cannot blame doctors for that. Since i'm into medical field now, I understand it more clearly. However I am such a guy who will struggle till the last minute to achieve something. So, I am not loosing my hopes at all. I am with my grandmom whenever possible. As she is in ICU right now, we are allowed to visit her only for 2 hours in a day. Surprisingly, last night when I was with her, she responded and she responded very well. She recognized me immediately and even tried to talk to me about something which I did'nt understand because of her trachestomy. I was soo happy to see her very active after all these days. Right now, I'm heading to the hospital after finishing with this reply to you. I am planning to get her discharged today after having a word with our doctor. I have arranged all the amenities she will need while at home. I even hired a nurse who can stay with us at our home and do the services. I hope things will get better. Once again thanks alot for your support. It really makes me comfortable thinking that there is someone to say the real things in this difficult situation. 

 

Navin.

Reply
Camille, Community Member
4/25/12 3:49pm

i am looking for the answer to the question of what is the last stages of MS

Reply
Dean, Community Member
7/ 8/12 3:02am
Hi my wife has ms. And she diagnosed with this when she was 27. And now she is 37 it started with here vision in here eyes but up till now this is the only thing she has had but just last year I paid for an operation on here foot because she could not work properly on it and some times would go over this was nothing to do with ms as it was some kind sist resting on a nerve this has worked but now here muscle on the back of here legs are stif and some times when she works she can luck drunk she does have to go back to the doctors to see what the problem is. The reason I ask is this a good stage of ms as we have a 4year old daughter and when we found out about the ms we put it behind us moved on and said what happens to morrow happens and we will deal with it. I need to now so I can b prepared for it as I we are both depend on here but one I no she will need me which I now I will be no mater what she does not really whant to no much about it or read about it because she thinks the answers will just bring here down but we love here so much I starting to whant to no more so can start helpin and have more understanding. And what the next steps will or could be. And what I should do for here or can do if that day comes thanks. Reply
Farooq, Community Member
8/12/12 5:21am
Hi ev body, I am muslim and Allah (God) says in holy book (Quran) that there is no any disease in the world which has no treatment, so i believe that one day medical science will prove this too as prove other things accoring to Quran in the past. So dont worry every body recover InshaAllah. My wife is also a declared patient of MS since Nov. 2003 and facing secandary progressive MS. We have strong faith in God and sure to be recovered. Reply
Ashley, Community Member
10/14/12 9:49pm

MS is MERCURY POISONING from "silver" dental fillings which spew mercury vapor 24/7. Dr. Andrew Cutler PhD was poisoned by his fillings and created a protocol to cure MS. I know several people whose lesions disappeared after a year of amalgam removal and mercury chelation (using the Cutler Protocol). Mercury has a high affinity for sulfur, which is what the myelin sheath is rich in. You may have also gotten MS from the mercury thimerosal preservative in vaccines. I was nearly bedridden and now I'm almost recovered.

 

Watch BBC The Poison in your Mouth

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By imckelvin, Community Member— Last Modified: 04/10/14, First Published: 10/14/08