• mary mary
    June 23, 2008
    what are last stage MS symptoms
    mary mary
    June 23, 2008

FROM OUR EXPERTS

  • Merely Me
    Health Guide
    September 11, 2008
    Merely Me
    Health Guide
    September 11, 2008

    Hi Mary

     

    I have wondered about this too.  When you find out that you have MS one of the first questions which came to my mind was, "Am I going to die from this?"  It seems that the answer which is most given is that you don't die from MS but that you can die from the complications of MS, for example, respiratory failure due to bronchopneumonia.

     

    In The Free Health Encylopedia on-line,  I found this quote about mortality rates and MS: 

     

    "Less than 5 percent of people with MS have a severe progressive form of the disease that leads to death within five years. At the other extreme, 10 percent to 20 percent have a benign (relatively harmless) form with very slow or no progression of symptoms. On average, MS shortens the lives of women with the disease by about six years and men by about eleven years. Suicide is a significant cause of death in people with MS, especially among younger patients.

    Most people experience the severest disabilities of MS within five years of diagnosis. After that point, disabilities do not continue to worsen significantly. If no disabilities appear within the first five years, they are unlikely to occur at all."

     

    So it seems that MS can shorten one's life but the literature is not always clear as to how.  I am personally hopeful that with all the new research and new drugs coming down the pike, that many of us will not have to endure the end stages of MS. 

     

    Lastly I am going to give you a link to a doctor's answer specific to  discussing what constitutes the "end stage" of MS.

     

    It isn't a topic which is pleasurable to discuss but I am sure it is on everyone's mind who has MS or has a loved one who has this disease.  Thank you for your question.  I know you had asked this some months ago.  I just came aboard recently and am trying to answer any unanswered questions. 

     

    Hope this helps. 

    • Traci
      October 04, 2010
      Traci
      October 04, 2010
      No.  This answer it not correct.  It is simply not true that it will not progress past 5 years; that, after a person hits the five-year mark, disabilities do not continue to worsen.  That comment is almost laughable.  If you don't know me answer to a question, it's okay to say so,you don't have to make something up. READ MORE
    • Ellie
      January 22, 2011
      Ellie
      January 22, 2011
       ( MS at the 5 year period) Please find someone that can make things clear for you! MS at least the primary progressive type, My husband was diagnosed with it about 5 years ago this December (2010) and trust me its symptoms do not stop at the 5 year period.  READ MORE
    • crucker
      February 18, 2011
      crucker
      February 18, 2011
      You are so right. I have no idea where someone got the five year mark, first time I've heard that and I've been dealing with MS since 1978, now in secondary progressive stage. It's going fast now and, from others with MS I've known, that's pretty much the way it goes. I had a long time when I did quite well, worked full time and over, became a supervisor and did a lot of teaching, but it finally caught up with me. READ MORE

FROM OUR COMMUNITY

  • imckelvin October 14, 2008
    imckelvin
    October 14, 2008

    What are the symptons for the last stage of MS

    READ MORE
  • gforester April 03, 2009
    gforester
    April 03, 2009

    what the last stage

    READ MORE
    • Nora
      November 24, 2009
      Nora
      November 24, 2009

      My husband suffered with Progressive Multiple Sclerosis for 28 yrs. He was either confined to his power chair or bed. This last year the MS had progressed to where he needed help with everything including eating. He lost the ability to use his hands & had the intentional tremors real bad. The last 3 months of his life he had problems eating, swallowing & had a lot of confusion with everyday dealings. He ended up getting pneumonia and because of the progression of the MS he didn't have the strength to fight the infection. Sadly he lost his life Nov. 6, 2009. So i would think once everyday living becomes harder for them to handle it's time to look for more help. And make them as comfortable as possible.

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    • oregon_mom
      December 03, 2009
      oregon_mom
      December 03, 2009

      Nora, I am so sorry to hear about the loss of your husband.  It sounds like he was dearly loved and well cared for.  He must have felt your love even during the times when he may not have shown it.  I found your posting while searching end stages of MS.  I have a dear friend of over 35 years who is nearing the need to be bed-ridden.  Being the primary care-giver for a loved one who is dying is so difficult while you're going through it, yet we miss them so much when they're gone.  May God bless and keep you.

       

      READ MORE
    • Nora
      December 04, 2009
      Nora
      December 04, 2009

      Thank you for your reply. I'm sure Rick felt my love everyday, as he would always tell me no one could do what they did everyday unless they didn't truely love someone. He hated that he needed cared for like a baby a lot of times, but my love for him never changed. I quit my job 6 yrs ago & becae his full time care giver. Watching Rick get progressively worse with the daily struggles caused my the MS, was very heart breaking. I pray your friend find some peace as the MS gets worse for them. Just be there when you can for them. Thanks again.

      Nora

      READ MORE
    • Juliann sharp
      January 15, 2010
      Juliann sharp
      January 15, 2010

      i'm going thru that now wh my husband he has ms and now pneumonia i don't know if he'll pull through how did you deal wh it?

      READ MORE
    • Nora
      January 17, 2010
      Nora
      January 17, 2010

      Juliann, I am so sorry you are going through this with your husband. I still have trouble most days dealing with the loss of Rick. I do have days that are ok too. Not a day goes by that I don't miss him. It may sound weird, but I talk to him everyday. It helps me when I find myself feeling sorry for myself. I also have my faith and knowing tht Rick was all about living no matter how bad he was doing. I try to live each day to the best I can. I am here if you ever need or want someone to talk to. Just send me an e-mail.

      Nora

      READ MORE
    • Juliann sharp
      January 18, 2010
      Juliann sharp
      January 18, 2010

      thank you it is nice to talk about it.how long did your husband live after being diagnosed?you can email me juliegsharp@hotmail.com cause i'm neediing to talk.

      READ MORE
    • ashley
      January 23, 2010
      ashley
      January 23, 2010

      He was lucky to have had someone like you.  I have had Ms for 10 years secondary progresssive, drugs don't stop the flare ups and steroids are helping either. They want to do novotrone, I had it in 2002 it did help, but now they say I have plaquing in c2c3c4 and I am beginning not to have the ability to breath. I am afraid I have a11 year old daughter and a husband who is just mean. He has always thought that me being at home and not working was like a vacation. Tried leaving him but couldn't Oh well

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    • Ellie
      April 15, 2010
      Ellie
      April 15, 2010

      My husband Paul was diagnosed with ppms about 5years ago after having a brain tumor removed, he never recovered enough, has been in a wheelchair for the past 5 years, the progression has been quick, he has lost use of his rt. arm and struggles with his left arm, trouble swallowing and chokes constantly, how much worse is this progression, he has refused all medications for he past three years, we have 2 young children and I have to work, I am terrified of him choking, he has trouble with all food.

       

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    • MURFEE
      May 02, 2010
      MURFEE
      May 02, 2010

      My husband got pneumonia from aspirating into his lungs while trying to eat. They put in feeding tubes and when he got better tried him on baby food and easy to swallow type things. He aspirated again and got pneumonia again. On Christmas Eve they said he would die if they didn't put a feeding tube in.  They put a tube through his stomach and he came home the first of March.  I feed him every three hours by pouring what appears to be formula into the tube coming out of his stomach. He has a machine with a wand on the end that suctions his saliva when he feels he has to swallow. He says he misses food but seems to be doing ok.  He can move one arm for tv and the phone and thats it. I have a Hoyer lift to put him in the wheelchair to take him to the doctor. He is very lucky because he was in the paratroopers so the VA takes care of his mechanical needs and meds. He refuses to go to any kind of constant care facility so I do everything for him. He also does not like a lot of meds but takes for depression and spacticity.  He has been on every kind of ms drug there is but by the time they get to this point dont bother!! We don't have little children so thats a blessing, and we are not in Hell, but sometimes I can see it from here! Take care of the little ones, at this point they are the most important and have their lives ahead of them, and they need a healthy mom to turn to. It sounds tough but MS is a good teacher of reality.  My prayers are with you.

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    • Dijana Torlakivic
      September 30, 2010
      Dijana Torlakivic
      September 30, 2010

      I AM TRULY SORRY THAT YOU HAVE TO GO THRUE SUFFERING. I HAVE REACENTLY DEVELOPET SPMS. OFF ALL THE OTHER ONCE THAT I READ I JUST HAVE TO WRITTE TO YOU BECAUSE I WENT WITH MY EX-HUSBAND THRUE THINGS LIKE YOU AND BECAUSE MY EMOTIONAL AND PHISICAL INABILITY TO FIGHT BACK I GUESS HE REALISED QUICKLY THAT I'M HELPLESS AND MADE ME DAYLY BELEVE THAT I'M WERTHLESS AND NOTHING WITHOUT HIM PLUS THRATEND HE'D TAKE OUR THREE CHILDREN AWAY AND I COULDN'T DO NOTHING ABOUT IT, FOR I HAVE MS HE REFERED TO IT THAT I'M NOT NORMAL, A PHSYCO AND CRAZY. I LEFT HIM 4 TIMES BUT WENT BACK FOR THE REASONS HE MADE ME BELEVE I WAS FRIGHTEND SO I STAYED. THINGS ONLY BECAME WORSE. DAYLY PHISICAL ABUSE SOME OF THE WORST KINDE. I WOULD RATHER NOT GO INTO DETAILS BUT I GUESS YOU KNOW WHAT I MEAN. I COULDN'T TURN TO ANYONE, FOR I WAS ASHAEMED AND THAT I DESSURVE WHAT WAS HAPPENNING TO ME AT THAT TIME OF HELL/HOROR. I WAS IN A REAL BAD STAGE UNTILL ONE DAY I COUGHT A CLEAR THOUGHT AND IT WAS JUST TELLING ME OVER AND OVER THAT IF I STAY I WILL NOT MAKE IT TO THE NEXT YEAR. I LEFT HIM 10 YEARS AGO AND DIVORCED. DISSPIDE ALL THE THREADS HE MADE I RECEIVED FULL CUSTADY ON MY THREE CHILDREN. HE HAS NO RIGHTS TO SEE THE CHILDREN AT ALL BECAUSE THE COURT PHSYCIATRISTS EVALUATED THE CHILDREN AND DIAGNOSED THEM WITH PSYCOLOGICAL TRAUMA. I STILL HAVE TO DEALL WITH MS BUT IT'S MUCH EASIER TO COPE WITH IT WITHOUT A TYRAN ON MY SIDE WHO WAS BASECLY DIGGING MY GRAVE STATT TO HELP ME AND THE KIDS GO TRUE IT. PLEASE I AM NOT TELLING YOU TO LEAVE YOUR HUSBAND. I JUST THOUGHT TO SHARE BRIEFLY MY STORY WITH YOU BECAUSE I THINK IT'S IMMPORTANT FOR YOU TO KNOW THAT THERE IS HELP AND SUPPORT OUT THERE INCLUDING YOUR DOCTOR. ALL YOU HAVE TO DO; WHICH I KNOW IT'S HARD TO START TO TALK ABOUT SURTEN THINGS BUT IF YOU DON'T LET THEM KNOW THEY WONT BE ABLE TO HELP YOU, OPEN UP TALK, TELL THEM WHAT IS GOING ON ASK FOR HELP.THEY'LL REFER YOU TO PEOPLE WHO CAN HELP U OUT OF THIS DILLEMA. DON'T LET THEM PUT SOME ANTI DEPPRESSANT ON YOU OR A PSYCIATRIST IT WILL NOT SOLVE YOUR PROBLEMSS. PLEASE CEAPE IN MIND THAT YOU AND ONLY YOU IS THE MOST IMPORTANT PERSON AND YOUR HEALTH/LIFE, WHICH THERE IS ONLY ONE TO LIVE, IS THE MOST IMPORTANT THING IN THIS WORLD. YOU ARE A STRONG WOMAN JUST FOR THE FACT OF DEALING WITH MS. PLEASE KEAP THIS IN MIND AND DON'T EVER FORGET IT. I BELEIVE IN YOU AND WISH YOU THE WERY BEST!!!!!!!!!!!!!!!!!!!!

      READ MORE
    • candigreg
      February 07, 2011
      candigreg
      February 07, 2011

      Nora:  My baby sister is 37 and has this PPMS...I need some answers and none of the doctors really give you hope or anything.  Will you please call our family we need pesonal guidance from someone who understands.  Please.

       

      READ MORE
    • mommiemel
      August 11, 2011
      mommiemel
      August 11, 2011

      Im sorry if this brings up bad memeories... but please answer this for me... no one will tell me. Did he have lesions on his spine, brain or both? I have been diagnosed owith ms in my spine??? Im pretty young and my doctor looks at me like im a quack. thank you for your time

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    • deea
      July 11, 2012
      deea
      July 11, 2012

      in feel ur pain my step father is the same way now he has had ms since 2000 thats when they found it anyway the docs have him on everything u can think of but not much help now he has bed sores starting on his spine i really dont know ifs there is an answer to end stage  every day is different just love them they know it

       

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    • karen stocke
      November 11, 2012
      karen stocke
      November 11, 2012

      Hi Nora  my husband has MS.....he has had it since 1990....we got married in 1999.  he was still able to transfer himself and drive and cook and shower and cath himself......by 2002 I had to quit my job as a Pharmacy Tech to take care of him fulltime.  He could no longer cath himself or transfer...he hadnt been able to walk for 4 years by 2002. He has been using an electric wheelchair since I met him....he use to be able to operate it himself but now I use a caregiver joystick on the back of his chair... He can only move his neck now and not very much at all.   Now I do everything for him....he has trouble swallowing and his saliva collects in his throat so I need to suction him everyday, once or twice.....  He had a peg tube put in a couple of years ago when he got pneumonia and in July this year he got a septic infection from a bladder infection....he has a supra pubic catheter in so I am not sure how his bladder got infected.....I change his tube once a month and am very careful.

      He also gets an occasional bed sore but I have been pretty successful in healing them.  I recently took him to the wound specialist nurse because his butt area was so red and found out it was a yeast infection..who knew it could spread to there?! I have no help with him because apparently with his pension and SS we make too much money to get anything for free.....His family live 1hr or 2 away and very seldon come to visit as he can no longer talk.... Anyway lately he has been losing his short term memory and imagines he is hearing people in the house that arent there, like his mom and dad, or my daughter, and lately a stranger.  He also has been moaning in his sleep continuously....then 2 nights ago after I got him in bed he started looking to the left and then his eyes rolled up into his head and his head started twitching and he moaned very loudly and his lips turned blue...I was just about to call 911 when he came back around and acted like nothing happened.  It lasted for about 10 min.  I called his MS doctor the next day and they said take him to his regular doctor.  I wondered what they could do?  They arent going to give him an MRI and since it was just one episode that I am aware of they arent going to put him on epilepsy pills.  I just wanted to know if this is part of the end stage of his MS....can I expect this to happen every once in a while?  Did you experience any of this?  I cant seem to find an answer to this and thought maybe you or someone else here could enlighten me....thanks for any help you can give me....my email address is teekers44@aol.com

      READ MORE
  • gforester April 03, 2009
    gforester
    April 03, 2009

    what the last stage

    READ MORE
  • Marie June 05, 2010
    Marie
    June 05, 2010

    I saw your posts while looking for the symptoms of the last stages of MS. My sister have been diagnosed around 6 years ago and since she degenerated very fast. The doctor say that her MS is agressive. She is in ICU right now with difficulty to breath on her own. Being bed bond for at least 2 years and depression have made her slow and sometimes irresponsive. That did not help. We have still believe that she is going to get out of this because we found clinical trial that became a hope for her and all of us. We were going to Chicago this month for the evaluation but unfortunetely she got really bad. I just though about sharing this information with all of you. Who knows it can still be good for you. I found the website of this man that participated of this same trial in this same hospital around 10 years ago. the address is www.allyoumed.com. After the trial he became MS free. The John Hopkins was doing it two but they closed it. No one wants to finance cure in this country. Please check this guy gives good info and I was preparing my sister to go for the evaluation as I said. I have faith that it is still going to happen for her. I feel for all of you as I see her fight. Hope I could add something to this tread. Take care.

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  • atruprincess4eva July 17, 2010
    atruprincess4eva
    July 17, 2010

    My brother has been bed ridden for three years. Also, in and out of the hospital because he was septic from bladder infections. His heart stopped once in an ambulance but by the grace of god he is still here. Hes had MS for ten years and he is 36 years old. He hasnt been able to feed himself for the last two years. His wife and the rest of our family take care of him round the clock.

    His MS initially got real bad four years ago after the passing of our father. He was depressed and his effort for improvement decreased. It showed in his physical thearpy and other theraputic events. Then he got sick and then came the bed soars. He just gave up. However, I know he fights today to see his seven year old daughter grow up..

    READ MORE
    • patti
      July 18, 2010
      patti
      July 18, 2010

      My mom has had Chronic Progressive for 20+ years.  The past 10 years have been really really bad.  My dad retired to be her full time caretaker.  In the past 2 years, she's been hospitalized and nearly died of Sepsis fr. bladder infection.  She had a peg tube b/c she couldn't swallow.  She regained ability to swallow after one year and peg tube came out.  She is down to around 90 lbs, skeletal.  She has no use of limbs and body from waist down.  Her hands are shut closed.  She cannot move.  She now has bed sores that will not go away.  She is on Fentanyl patches for severe pain.  Her feet and ankles are sooooooo swollen she cannot wear shoes.  She has slept in a sitting position (refuses bed) for almost 2 years.  She sits on the couch and has anxiety when in bed.  She is having difficulty breathing.  She is only 65 years old and is about to celebrate her 50th wedding anniversary with my dad.  She's holding on for the big day...8/28/2010.

       

      She is very quiet, dazed, and chokes frequently.  I feel so sad.

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    • Shannong215
      July 18, 2010
      Shannong215
      July 18, 2010

      Patti,

      I found this page tonight searching for some answers or perhaps a person that felt a common understanding with me. I think you and the group on this page are what I've been looking for. My mother has had chronic progressive for roughly twenty years, possibly longer. The past three she has been confined to her electric chair/bed. She cannot move from the waist down (of course the spasticity causes her legs to move, but not of their own volition). In the past three months, she has hardly been able to keep her head up, it just lulls around in her chair sometimes and she appears hunch-backed. She has to sleep on the same side each night in the fetal position with cushions in between her legs and feet to keep everything from attacking each other. She cannot turn over or adjust if she wanted to. It breaks my heart. I fear she is reaching the point soon where she will have the difficulty swallowing, moving her one good arm, hands shut closed, etc. I am frantically trying to prepare for the "what's next" but as we know, that is so impossible with this awful, dire form of the disease. I just wanted you and the others to know, you're not alone in your sadness. My sister keeps telling me to just be there for my mother, so I am trying so hard to do just that. I am getting married in October and can only hope she will be in a healthy enough state to see me walk down the aisle. It is all very emotional.

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    • Ellie
      August 01, 2010
      Ellie
      August 01, 2010

      Shannon,

       

      It sounds very sad and long, My husband has had Ms for what i think is the past ten years, but was diagnosed about 6 years ago, I can not believe how strong you have been for her, she is very lucky to have the love and dedication of her daughters, I hope she is well enough to see you walk down the aisle with your upcoming wedding, this too brakes me to pieces, we have a 13 year old daughter and 15 year old son, I get choked up a least several times a day thinking that Paul will not be able to see his daughter walk down the aisle, or our son graduate from highschool, his Ms seems so terrible and aggressive, he is very angry and sad my heart aches for him but I havent been able to reach him in his dark place, he just gave up.. I pray for you and for your Mom to be there for you and October.

      READ MORE
    • Shannong215
      August 01, 2010
      Shannong215
      August 01, 2010

      Hi Patti,

      Thank you for your kind words. This past week was a "good" week, my mom was more lively than usual, didn't have as much trouble keeping her head up, etc. The little improvements like this, fleeting as they are, keep me going I think. I think it's important for us to stay strong for others in the family, you for your children and me for my sister. I know the pain you are going through and I am so sorry for your husband's progression. Your family sounds lucky to have you, and if you remain strong it will help the kids to deal with it just a little bit better. If I have any advice, it would be that with my mother, she often pretended like nothing was happening, and I think it is good to talk about things and keep the lines of communication open, especially with teenagers. I will keep your husband and family in my thoughts and prayers as well.

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    • klpkiwi
      November 29, 2010
      klpkiwi
      November 29, 2010

      I am wondering what the first ten years were like? My friend was diagnosed with MS ten years ago at the age of 21. He does not have too many symptoms other than somewhat frequent tingling in areas. I am wondering if that is normal the first 10 years and then it gets worse or if that may be all he ever endures?

      READ MORE
    • Claudia
      November 29, 2010
      Claudia
      November 29, 2010

      Hi I'm so sorry about your Mom.  My Mother is 67 (will be 68 in January '11) and has been battling MS for over 40 years now.  She's currently in a Nursing Home for almost a year and has steadily declined over the past 2 to 3 years.  This past year has been especially difficult.  She had pneumonia last January and was hospitalized for a week, came home and was back again 3 days later. She also had a pacemaker put in and at that time I realized I couldn't giver her the care she needed so I put her in the Nursing Home by my house.  Prior to living w/me she lived on her own in a handicap equipped apartment and lived there for 20 years by herself.  The last 18 years she has been confined to a wheelchair and by sheer determination managed to do this by herself.  Of course I would go over all the time and help her clean or take her to the foodstore etc.  In April she feel out of her wheelchair at the Nursing Home (she was going to pick something up off of the floor and forgetting she's in a wheelchair) and broker her hip, she had a hip replacement and has not recovered as we would've hoped for.  I think she's tired and is giving up.  She raised me and my brother by herself and did it w/a smile, but we're both in our 40s now and she's been thru hell and back, so I think she is giving up.  I pray that she will get back to herself (she's confused and out of it most of the time) but I don't blame her if she doesn't.  This is a very difficult time for us to see her like this and the guilt I feel that I wasn't able to care for her myself is tremendous.  Even though everyone tolde me I was doing the right thing, it doesn' stop the guilt.  I just hope and pray that one day she will find peace and will be pain free because she deserves this more than anything....lots of love and prayers to you and your family.... 

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    • Shannong215
      December 13, 2010
      Shannong215
      December 13, 2010

      I'm sorry, I realized this was meant to be addressed to Ellie, not Patti. My apologies!

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    • Shannong215
      December 13, 2010
      Shannong215
      December 13, 2010

      Hi kipkiwi,

      In my mother's case, it's a bit hard to quantify the "first" ten years, because she actually wasn't diagnosed until she was around 40, but there were some signs of the disease much earlier on, possibly around 20 at the earliest. But, I can say that from ages 20-45, any noticeable symptoms were minimal. The biggest obstacle was the trouble walking - she had the typical MS brace for her right leg (to lift the toes of her foot so they wouldn't drag), and could walk very short distances and pretty slowly with it on. But year by year that became worse. It wasn't until she was about 51, four years ago, that she became confined to the wheelchair (this was also the result of a series of falls she experienced while still trying to walk with a walker... it seemed to worsen very quickly after that). She has primary progressive MS, however, which I understand to affect only about 5% of the MS population. I think my mother's case is possibly on the more severe side, so I don't want people with the relapsing or secondary forms of the disease (or friends or family of someone who has it) to read this and think it's a death sentence - it likely isn't. I would just like to be honest in answering your question. I think if your friend does not have primary progressive MS then he could very well be ok for a long, long time.

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    • Shannong215
      December 13, 2010
      Shannong215
      December 13, 2010

      Hi Claudia,

      Thank you for your thoughts and prayers towards my mother - mine are with yours as well. I am sorry for the delay in response - I actually just got married and returned from my honeymoon today:) The good news is, my mother was able to make it through the full wedding day (resting at our house in between the church and reception), and she and my father walked me down the aisle - her in the motorized chair to my left and my dad on my right. It was an emotional time but I kept it together! Your mother sounds exactly like mine - strong-willed, determined, asserting her independence in any way possible even when the odds are against her. I know what you are going through, especially the feelings of guilt when you can't be there to care for her all of the time, or to catch her when she falls (I have been through multiple falls with my mom, in fact, a few years ago when I was 24 and living at home after college, I awoke to a scream and found my mother on the bathroom floor). I know the feeling of wishing for peace for her and, above all else, relief from the pain. I think all we can do is continue to be there for our mothers and let them know we appreciate all they've done for us.

       

      I do have a question - do you know of any other online resources or blogs similar to the one we're on right now? For years, I have had a hard time finding people to connect with, specifically families or friends of people with primary progressive MS. I'm thinking of starting my own blog as a community where people in this taxonomy can go to, but I'd like to know what's out there already.

       

      Any resources anyone can pass along to me would be helpful. I can also provide my email address if that helps.

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    • gertiebob
      September 28, 2011
      gertiebob
      September 28, 2011

      Hi, not sure if you are still on this site but I am currently going through what you wrote above.  My mom has been getting infections (which she told doc where UTI's) but I finally called him and we went to hospital.  They kept her for 7 days on an antibx/pen combo drip.  Neuro told her she was in the final stages and she could either keep trying to fight infections until none of the antibx work or go with it.

      She decided to go with it and is now home with hospice.  I know no one can tell when when but I want to at least have an idea of what is around the corner.

      The daily bladder issues, UTI's, lose of voice, shallow breathing and the look of pain on her face is so sad.  I pray she doesn't have to suffer much longer but I really don't want her to go.

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  • MC
    MC
    December 03, 2010
    MC
    MC
    December 03, 2010

    Does anybody follow the Dr. Swank diet or the McDougall diet it's supposed to really help and if followed correctly even stop it. Don't lose hope.

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  • Denise November 20, 2010
    Denise
    November 20, 2010

    Dear Friends,

     

    As I read your story my heart breaks- my mom has struggled with MS for 20 years.  She has been wheel chair dependant for about 10 years and is now struggling to eat and talk.  She has times where she just stares off into space and is basically unresponsive.  She will also just suddenly nod off while in her chair.  These episodes only last a few seconds to a few minutes but she is slow to recover.  I can find no information on this.  Has anyone else had this experience?  Please help!

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    • Shannong215
      December 13, 2010
      Shannong215
      December 13, 2010

      Hi Denise,

      Remarkably, although my mother's MS has been worsening quite progressively over the past few years, her mind has remained fully intact. She doesn't appear to forget things or become confused or gaze into space. However, I have read some other posts on here of people in a similar situation. I am monitoring for signs of this in my Mom's case as well. I'm hoping that by responding to your question here someone else will see the updated posting and possibly offer some more feedback or advice. My thoughts are with your mother. Also, I am in the same boat as you in that I cannot seem to find information on this form of MS anywhere - have you had any luck in finding any other websites, forums, or blogs since you last posted? I'm almost thinking of starting my own.

      READ MORE
    • iamhopeful
      December 26, 2010
      iamhopeful
      December 26, 2010

      Hi Denise, I am the youngest of six children caring for my mom who was diagnosed with ms in 1970.  I was five at the time and basically spent my life thru her different stages being her caregiver.  She slowly progressed and fought the disease with a positive attitude for many many years.  She is now 80 and I found myself at this site because she is showing symptoms similar to what you are describing.  I am trying to find out what the end stages of ms are.  I was there today and she wanted to speak but the words wouldn't come, if they did it was barely a whisper.  She is so hunched over in her wheelchair and nods off all the time.  I look at her and it appears she is just staring into space with no reactions at all.  She has been in the hospital three times this year with a UTI from the catheter she has had for 20 years.  My dad has been her main caretaker, until he was diagnosed with cancer in april.  We have aides assist us also, but they have gone from being very comfortable to their savings is down to just about nil.   Actually, I don't want to talk about money, its looking at my mom and seeing someone who is a prisoner in her body.  Her left hand works occasionally, but usually not.  She has no bowel control, can't feed herself, but my dad makes it his lifes mission to stay upbeat and keep her happy.  I leave their house half the time crying as soon as i leave.  Ms is a thief.  Dad refuses to have them go to a nursing home so we rotate around the aides they have to take shifts and care for them.  I have my own family, a job, and a life that is 45 minutes away from them.  I want to help them, but the stress is so strong.  I'm not a professional, just a daughter trying to do the best I can.  I feel bad for my brothers because they are doing personal care things that sons just shouldn't have to do for their mom.  But they do it, and I respect them for it. I love my parents, but things are only getting worse.  I can see her deteriorating in front of me and I just don't know what it is that will actually take her.  I don't think I have any answers for you, Denise, but I am going thru same thing and taking one day at a time.

       

      Hope

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    • Worried
      December 30, 2010
      Worried
      December 30, 2010

      Hi

       

      I'm really glad I found this site.

       

      My mum was diagnosed with primary progressive when I was about 14, almost 18 years ago now. Our lives changed from that moment on. Dad is her main carer. He gave up work to care for her. I live at home too and so take over when I come home from work. Seeing her deteriorate year after year breaks my heart. My mum and dad are not positive people, and so there is no support network to bounce off and pick ourselves up from. It is so depressing for all concerned.

       

      I worry how i will cope if anything happens to dad. Both of them have said they don't ever want to go into a home and they don't want anyone in to help. I don't know how I am going to manage. We don't have any other family. A family row years ago split us all up and so its just us.

       

      I spend my life worrying about how bad it will get. At the moment mum is in a wheelchair, she has practically lost all use of her right side and her left side is weak. She suffers from constant water infections which make her really ill.

       

      I am having troublle coping. Not just with the MS, but with the mental aspects i am struggling with. I feel like I am going mad, i feel so anxious.

       

      You are all so strong on here. I feel like a failure. Like I am not good enough. I don't feel I am a good daughter.

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    • Dorrain
      December 30, 2010
      Dorrain
      December 30, 2010

      Hello, My name is Dorrain

       

      I had a sister (Debra) who recently passed from Ms. I know what the end stages are because I experienced them. If you want to chat please email me. dorrainroundtree@yahoo.com

       

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    • iamhopeful
      December 31, 2010
      iamhopeful
      December 31, 2010

      The fears you have are valid, and you shouldn't feel ashamed for your feelings.  MS is such a tough battle and you realize that the person you love and care for are just innocent victims of a terrible disease.  I know that one of my biggest fears is that I'm not a nurse, just a daughter doing her best.  When my dad got diagnosed with cancer last april and couldn't take care of my mom anymore, it was our greatest fear come true because he was the main caregiver.  It has turned our lives around and I am doing things I never thought I could or would.  There is equiptment out there that makes life easier, such as a hoyer lift and a hospital bed.  Im not sure what assistance is available to you through health insurance or your governent, but you should look into whatever help you can get.  State of mind is so important too, you say they are not positive people, have you thought of medication or help from local volunteers or church clergy who can stop in for visits?  My parents also don't want to go into a home, and we are doing all we can to prevent it.  BUT, when the time comes that they both need more care than we can give and we have made every effort to keep them at home you may have no other choice.  The option is there, and it may be for their best interest to be where professionals will be caring for them and you can go and offer your support by visiting and letting them know you love them.  It is also important to take care of yourself.  You deserve a life also, and need to make time for yourself so you can be a good caregiver.  There isn't an easy answer.  Since last time I wrote, my mom was admitted into the hospital for the third time in six months for dehydration.  Each time she comes home she is a little worse off than when she went in.  I have plenty of fears about how things are going to work out and whether there is more I should be doing.  Take one day at a time and know that the fact that you havn't  walked away and you are there for them is more than alot of family members do.  

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    • Ellie
      January 22, 2011
      Ellie
      January 22, 2011

      Please Do not feel like you are a failure, you are a terrific daughter your parents are so lucky to have you,  My heart brakes into pieces for you. complex MS is a terrible disease with so many aspects to it. Pray for strength and understanding, feel free to contact me if you need someone to talk to.

       

      Ellie

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    • djsuejon
      October 12, 2012
      djsuejon
      October 12, 2012

      Hi there,

      My mom's had MS for 36 years.  My dad who can only walk with a walker takes care of mom at night and I during the day.  We take her to the bathroom every 3 hours, she has a GI feeding tube and gets meds every 3hrs. 

       

      I have a 2 year old and I am one month away from having another baby ... my husband and brother also live at home with us. 

       

      Could life be any harder and more painful and terrible?  My dad and I constantly complain!  There is so much negative energy in our house.

       

      Don't feel bad about yourself, I'm sure I am worse!! :)  I love my mother dearly.  She can move her head slightly, but can't hold it up or move any parts of her body.  She's had pneumonia twice which is worse than a nightmare.  When you are in the same room with her you can hear the phlegm in her throat as every breath is hard work.  Each time she catches one of our colds, we really start to pray again. 

      It is hard to see any silver lining but my mom is so happy to be alive and just wants to live. it alone as most things she requires is a "2person job" according to home care.  I know I am a terrible daughter as I grumble through life I always think what will come of me come my own judgement day as I can yell and complain better than anyone.  So feel good about yourself!!!! 

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  • John October 09, 2010
    John
    October 09, 2010

    My wife was just informed that she has Advanced MS what can we Expect

     

     

     

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    • Shannong215
      December 13, 2010
      Shannong215
      December 13, 2010

      Hi John,

      I just saw your post - I will say that I am not a doctor but I am the daughter of someone whom has had primary progressive MS for roughly 20 years (possibly 30, but the doctors were reluctant to officially diagnose the disease for a great many years so we don't have an accurate "starting" point). Is this your wife's first diagnosis? How old is she? Although I may not neccessarily be able to provide medical advice, I can try to offer tips on keeping things comfortable for your wife and give you some insight into what I experienced in my mother's case (good or bad, depending on what information you are looking for). Just let me know. Also, please let me know if you find any other websites, forums, or blogs such as this that you've found helpful for people or families of people with advanced MS - I have always had a hard time finding people to connect with on this subject.

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  • minnie me November 23, 2012
    minnie me
    November 23, 2012

    Could the patient have severe head pain?

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  • hermine  schiffman February 09, 2012
    hermine  schiffman
    February 09, 2012

    my sister is 72 and has it since she was 30.  at this point in her life she is confined to the bed. she can not sit up by herself. her left side does not move. she has physical and occupational therapy. so far to no avail. what is the next step for her?

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  • momdukes January 17, 2011
    momdukes
    January 17, 2011

    Hi the is smomdukes, do not feel bad.  I was DX with MS in 2004, I was told that I had it all my life, it just chose to reat it's head in 2004.  For that I am greatful, my girls were through HS by then and finished with marching bband, cheerleading, debate and all those other HS things.  I have the mildest form of MS that there is so for that I am blessed, I am not sure what it is called.  I have trouble walking, and the trouble is with my knees they are weak, and I have the usual problems the trouble with fatique.  I take the B12 but only when I really need it because he body gets use to it and soon it will not work, so I use it only when really needed, the same thing with Progivil.  You just have to learn your body, then you will be able to judge what you can and cannot do. Like it has been said, MS cannot kill us, it is the symptoms from something else that can come along with MS such as pnomina, and other stuff like has be said before.  Do not borrow troubles, you have a long life ahead of you, keep yourself healthy, excerise, laugh do not worry about tomorrow, I don't!

     

    sherry/smomdukesKiss

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  • clharris January 16, 2011
    clharris
    January 16, 2011

    Hi, my mum was diagnosed with ms roughly 12 years ago when i was 9 although the doctors think she may have had it longer. My mum suffers from primary progressive ms. I cant really remember what my mum was like before this disease and i wonder all the time about the type of person she was, i have a feeling the woman i see today is a shadow of the woman she was. She has been wheelchair bound for the last 5 or so years and things are getting worse she can no longer do even the most simplest of tasks without assitance, she has recurring urinary tract infections and is starting to lose control of her bowels. My dad is her main care giver although me and my siblings help. I feel so stuck and helpless the way things are my dad works long hours and is often away on business trying to provide for our family. I feel the stress of everything radiate of him and i feel so sorry for him, i feel like i should be doing more but i dont know what i can do. He never gets a break, hes such a kind man and i love him so much. I have this gnawing guilt all the time because i feel so frustrased and annoyed and constantly have the "why us" "why my mum" feeling. I know i should be stonger and more accepting of this disease but i just can't. I hate that this disease has taken my mum away from me. I feel like a terrible daughter most of the time. Thanks

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    • marie2011
      February 22, 2011
      marie2011
      February 22, 2011

      hi ya, i came across your post while working i'am a domciliary carer and i help look after a lady who is 32 and has got ms. you sound so over whelmed by your sistuation, i was wondering if you knew your family could get help with your mums care, to take some of your stress away. this may seem like a scary thought but it is worth while considering, not saying it as it is my job, i see the stress any disease can bring, and i also see the comfort in reletives faces when they know there is help and they are not so alone. we all need a break from time to time. 

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