Have I reached the end of the line? (Drugs, treatments)

I wish I could just reach out to you and give you a HUG. I can feel how difficult this is for you. Please try to keep a positive attitude. I just know you are doing the best you can with the overwhelming progress this disease has handed you. I hope there is someone here that can give you another idea. I do not think there is any way to prepare for the inability to move. I do know you probably feel like such a burden, but let me tell you that you are NOT!! I have felt that way and get very depressed when I have episodes where I cannot move at all. We do know a little about how you feel. All I can tell you is that God has a plan, a great, wonderful plan for you. I wish I could give you a better answer. I do hope and pray that a miracle will come your way. Blessings to you.

Dear Gratefrul, your name says it all.  He puts no more on us than we can bare.  This diease that we have is a monster, it is like a theif, it steals.  Most of us at one point in our lives were very productive people, doing so much.  You know what I tell people, maybe the Lord thought that I was doing to much so this was his way of slowing me down, I do not know, maybe I will never know in this life, but we will all understand it better by and by.  I can imagine that at times it is very discouraging, but let not your heart be troubled, keep the faith and never cease to pray, thank Him for the good as well as the bad.  When man man's knowledge ends God's grace begins.  So just be faithful.  Have you tried Beteraserone, that is what I use, talk with your doctor about it and see what they say.  Keep praying toiling on, there soon will dawn a brighter day.  I have good days, and there are bad days also, that is the nature of this beast.  Grateful, hopefully things will get better, you will be in my thoughts and prayers, things will improve.  sherry/smomdukes 

Hi Grateful and welcome.

 

So much has been said already which I echo.  As far as MS treatments go, one which comes to mind is Novantrone.  It is used in worsening RRMS, Secondary-Progressive MS, and even Progressive Relapsing.  Perhaps you can discuss it with your neurologist.

God bless you Mr. Grateful! I am going to pray that you find some answers. I have a little saying on my refrigerator: "I don't know what the future holds, but I know Who holds the future." Remember that the Lord holds you in the palm of His hand. You are so important and never forgotten. Grace to you.

I also echo evrything said above.  I also will incude you in my prayers.  I already know you are "Grateful" for any and all blessings so just go forward the best that you can.  My only suggestion is to try some of the non-medical complementary advce e.g., no red meat, no diary and limited animal fat.  I don't know if it will help but I also don't believe it will not hurt to try.  Now given your situation with weakness and fatigue, suggesting some  type of exercise might be an overwhelming thought.  "They" say its good for you .  Maybe you can speak to your doc or to a PT.  Be careful to not let depression (discouragement) overtake your efforts to cope.  That big chair might be comfortable but only you can decide how much you want to fight the monster.  Its probably good to talk to us too.  As you can see we will talk back.

 

I know when I am discouraged , the wonderful people  help the Lord lift me up.  I pray that you find the inner strength to move pass the obstacles and find your way.

 

 

 

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“How does a person prepare for when you can hardly move anything anymore?”

 

Hi Grateful,

 

I empathize with you. I guess focus is the key because you’re dealing with an onslaught of health issues.

 

Remember what you do have. Judging by your question you have your mental faculties going for, your eye sight… the point I am trying to making is; you have some very important things you will need as time goes on.. I suggest you never forget this and make the best of what you have got using them to your advantage with your battle. Stay positive! I believe it is 10 time stronger then negative energy. Be optimistic that anything can happen and sometime, a lot of times they do.

 

My 2 cents for what it is worth.

 

Stay well,

Joe

Grateful,

 

    All i can say is NEVER give up HOPE, NEVER

 

 I was paralyzed, had been getting hit over and over with exacerbation after exacerbation for about 2 years.

 

  I couldnt swallow,talk,walk,sit up,foley cathed, etc etc.

 

  the Drs were telling me to accept it and prepare for a nursing home.

 

  I told them to Go away and never put a limitation on me- Only God can do that

 

 

16 years later (today)-  

  I  walk, I swallow, I talk, I see, I feel, I use the bathroom, Etc.  

 

 

   Ive had this for a long time. Im 40 now- But my mother thinks she saw signs of it when i was a child, I certainly felt them.  There is no "course" and if anyone tells you that Refuse to belive them. no one really knows.

 

  Also Each and everytime I got a new exacerbation I ALWAYS expected to recover, I surrounded myself with Positive videos (at the time there were no DVD's lol) positive books etc.  I got rid of alot of toxic or negative people and thoughts. And refused to think negative thoughts.  It truly worked for me

 

 

    I suggest Norman Cousins book- The title escapes me- but he used laughter to cure what ailed him

 

    Louise Hay books are wonderful!

 

   The Bible of course!

 

  Wayne Dyer

 

 

   never ever give up, You can get better! At one point I tried Aptherapy- (bees) It worked once for me. It instantly brought movement back to a paralyzed toe- it works different on everyone.....................There is a group online, I know its called Apitherapy-

 

    I agree with the poster before me, I tried everything natural I could find- changed my diet etc.  Something worked!

 

 

   Also,,,,,,, I remember one day feeling kinda down I was in the wheelchair in my kitchen, My son was a toddler at the time,.... he was at my feet in his little walker thing-    Well I was feeling down and I finally just threw my arms in the air and said OKAY!  Time for you to take over Lord. And he did.

 

  Praise God he is Good

 

Never give up :)

maria

Grateful,

I can't say if there any different drugs.  You seem to have been through them all.  The only one I didn't see was Alertec but, it may be there under a generic name.  I am currently taking Concerta SR.  It is basically Riddlan but metabolizes over the day.  I did not find either of those dugs made nay appreciable difference.  I was hoping the Concerta would help with focusing; I have several lesions on the brain which are affecting many of the executuve functions such as focusing, comprehension, short term memory, speech and, depresseion.  I have battled that demon since I wae about 12 yrs. old.  My father self medicated with alcohol and, eventually hung himself.  I know the pain is gone for him.  I often think I'd like to join him.

 

You certainly have been given quite the challenges.  It sound like your faith,family & friends have been an amazing gift for you.  I think you deserve to be discouraged as the disease has progressed quite rapidly.  It must be quite scary.  Do you have a counsellor or psychologist you can tallk with.  The fatigue is always there and, I'm working on figuring out who the new me is and whai I can do and, stop dwelling on what I used to do.  I was very active in the community working in the field of social services.  I live in Canada but, I don't know if our health care system would be of any more help for you.

 

You have my sincere admiration for how you are dealing with the rapid progession.  I will keep you in my prayers.  Some days I think chatting with "The Big Guy" is the only and the best thing we can do.  I know He has a plan.  Just wish He'd tap me on the shoulder and give me a hint!  I'm sure you do as well.  Have you had or thought about a second opinion?  Keep up the good fight.  I wonder if a stem cell transplant would be an option.  've see the results, the lady was bedriden.  She now can walk, participate in her usual daily activities , ahe is even friving again!  If you don't ask you don't know!

May The Good Lord continue to shouer you with His Love and many nore blexxinfs.

SherryO