How many people think they are getting or are gonna get better?

    • Anonymous
      November 13, 2007 at 12:19 am

      Positive attitude (next to impossile at times we all know) is a major contributor to our health and recovery or the life that many of us are left with after serious struggles.

      [COLOR=”RoyalBlue”]How many polsters believe they are getting better or gonna eventually “whup” CIDP/GBS? [/COLOR]

      This is what you believe… not what a Doc or someone else who has barely had a whiff at our disease says.

    • Anonymous
      November 13, 2007 at 2:41 am

      Had I not believe and only listened to the docs, I wouldn’t be here!! I will never stop searching for ways to improve my health and to live the fullest life I can ๐Ÿ™‚

    • Anonymous
      November 13, 2007 at 9:39 am

      I have my mind made up that I will beat this thing out. Failure is NOT an option. Have only been down with this thing for a few months now and don’t know what all will come back but will take whatever i can get and then push for more.

    • Anonymous
      November 13, 2007 at 11:33 am

      If I say I don’t believe I’m going to get better, does that mean I’m saying I believe I’m going to get worse? Because I don’t think that.

      While, I don’t believe I’m going to recover from cidp (because it’s chronic, because it’s autoimmune, etc), where I am now is mostly fine with me and I sincerely think I’ve platueaed as far as cidp related illness is concerned. So am I getting better? No. Am I going to get worse? Absolutely not.

    • Anonymous
      November 13, 2007 at 12:15 pm

      Emily is getting better & stronger every day. I think that she can & will overcome this either by doing the IVIG & the CIDP burning out or when they find a cure for it – which they WILL.

      Quoting George Michael, which is something I didn’t think I’d ever do, “You just gotta have faith!”.


    • Anonymous
      November 13, 2007 at 12:26 pm

      I am definitely trying to have faith. But right now I keep back sliding and getting worse. We just can’t seem to find the right combination of medicines. I am very hopeful, but at this point, no I don’t believe I am getting any better but I do believe eventually we will find the right combo and I will definitely get better.

    • Anonymous
      November 13, 2007 at 3:18 pm

      Just when It seems that the weakness is going away, and you have went a few months feeling as good as you can, here is comes again. Do anyone else feel the pain while your sleeping? You know the sharp pains and stabbing feeling in strange spots?

    • Anonymous
      November 13, 2007 at 5:43 pm

      I am so grateful that I did not remain the severly affected person in a power chair with no use of my hands; I was this way for almost 2 1/2 years. Chemo did arrest my CIDP back in Sept of 2003, then iI had two years of showing improvement. But since Sept of 2005 I really can’t say that I am any better now. So, no I don’t think I will get any better, but I very pleased that I can walk now with AFOs & that my hands improved a lot…

    • November 13, 2007 at 11:11 pm

      We are getting better and we will get better. Some days are harder thatn others but others are just like they used to be. The days in between are making us stronger! There will be a cure or we will go into remission, one or the other is going to happen, it has to. Kevin is too sweet for it to be any other way.


    • Anonymous
      November 13, 2007 at 11:36 pm

      There have been so many advances lately in autoimmune illnesses just since I became ill, that I do believe Dawn is right. My best friend’s husband came down with a severe case of Reumatoid Arthritis to where he lost the strength in his hands & had to shuffle to walk; now with Humera shots, methotrexate, & a small dose of prednisone he is pretty much normal again.

      I know of 3 people from my small town with MS who have remained stable because of a new treatment (some kind of a shot) & are still working, in fact, one is a dentist. I think there is a connection between all of these diseases, also maybe with cancer. I think we will definitely see better treatments & maybe even a cure for CIDP soon. Just last night I heard of a new drug that can be taken to ward of Type 1 Diabetes, how wonderful is that for the children of this world!

    • Anonymous
      November 14, 2007 at 1:03 am

      It all depends on my relapse LOL. I have to look at it that way.

    • Anonymous
      November 14, 2007 at 12:27 pm

      I have been the same for a year now. Knees down, numb, sore, drop foot and painful feet. One Dr. said my nerves in lower legs were SHOT. Will see when I try either Mayo (waiting for a call) or K.C. Neuros. Love my power chair. Regina

    • Anonymous
      November 14, 2007 at 10:35 pm

      I like to think ill be in remission forever, if the worst ill be is tingling and tired, Ill take that over unable to use my arms or wash myself anyday…

      just need to convince the docs to keep me on the methylpregnisone and codine and ill be ok without ivig or plasmatheresis.

    • Anonymous
      November 15, 2007 at 1:03 pm

      Not to be a Debbie Downer (sorry to any Debbies out there!)
      But my Neurologist always tells me I will not get better and I believe him.
      He also says with my current IVIG treatment though and the cutting edge medical treatments there is Hope I will not get worse. That my particular nerve damage from CIDP is irreversible once damaged the nerves will not regrow but at the rate I was going prior to my treatments I was headed for a powerchair within 1-2 years vs decades or never now if I can continue to stay fairly healthy. It appears whenever I get sick with Flu like symptoms, run down etc… is when my body starts to react and I can feel the difference. For the 6 months I was unable to receive IVIG I did get noticable nerve damage. I want to prove my doctor wrong but I also want to be realistic and IF this is as good as it gets I am okay with it. I can still walk assisted, I tire easy but I can still do for myself, I can still drive, and I’m here!! I am happy to have a caring, patient husband. Darling, sweet daughter and wonderful network of family and friends. I know, I am Blessed and am just making the best of it.

      Thanks to all of you!


    • Anonymous
      November 15, 2007 at 1:22 pm

      I am glad to see from the poll that we are part of a very possitive group. Attitude means alot to other forum members and also to our caregivers. I wish that everyone could be possitive but depending on how long you have had CIDP that does bring your vote down to a different level too. Also depending on what residuals this illness has challenged you with and if you are able to get medications and the IVIG treatments to give you some relief. Everyone of you are very important in my progress. I am glad to know the very possitive people on this forum and get the knowledge that the ones that might of voted no on the poll to continue to share their knowledge with us because together we make a great family that is willing to share their personal views and experiences! ~Happy Holidays Everyone~! ๐Ÿ™‚

    • Anonymous
      November 16, 2007 at 7:54 am

      I voted yes b/c in my heart I am doing my best to convince myself EVERY day that I will get better. My heart and head are two different things but I just had to say yes. I have irreversible damage, too. I am working with PT now for balance and strength in my ankles…we’ll see if it helps…and getting an AFO…Monday is the fitting. I dont want to get any worse than I am.
      I am very very very afraid of a relapse….the only prob is, we dont know if I relapse b/c things tend to decline verrrrrrrrrrrry slowly with no better times in between. I am doing no treatment right now…besides PT. Have not gone for IVIG like I was suppose to and I’m alright. I hope that isnt a mistake but I have my mom to tend to and all the stress that comes with that…

      We have to believe there will be a cure.

      my best to everyone,

    • Anonymous
      November 17, 2007 at 12:38 am

      Faith tells me that I will get better, much better, in the future. The question is: will it be here? ๐Ÿ™‚

    • Anonymous
      November 17, 2007 at 12:49 am

      That Is A Great Question And Depending On Ones Beliefs, It Could Very Well Be Here. Some Would Even Add, And Now.
      Stay Well My Friend.

    • Anonymous
      November 17, 2007 at 4:54 am

      It actually depends on your definition of better. I have lots of ups and downs. After each down I go back up, but generally don’t go as far up as I was before.

      As for whether or not I’ll ever be permanently better, from the course the disorder has taken in me so far I doubt it. But there’s always hope. Who knows: maybe before I’m dead they’ll actually invent some of those medical gadgets we see on Star Trek and be able to cure the world! :rolleyes: The blue of this smilie indicates how long I’ve been holding my breath.

      Keep fighting,


    • Anonymous
      November 18, 2007 at 10:48 pm

      I have the remitting/relapsing form of CIDP. I was diagnosed in August 2006. As the symptoms of the CIDP remit and relapse my attitude has also. It is a cycle. The longest I had gone was 5 weeks without progressive symptoms in between plasmapheresis treatments. I made it 10 weeks this time and the symptoms are not as bad as they usually are. Doc ordered 5 plasmapheresis treatments. I also have been taking Cellcept since February and Solumedrol infusions every 3 weeks.

      I believe I am going to get even better. There were times, shortly after I was diagnosed, I probly sounded like a crazy man telling everyone how this was gonna be the last relapse ect… and how I would be back working in full capacity. This has been a longer road than I anticipated but the road does seem to have fewer bumps lately.

      Thanks for you feedback. Many of you have such optimism. It is truly inspirational to me. Thanks again.

    • Anonymous
      November 18, 2007 at 11:13 pm

      I’m looking forward to treatments or a cure that will help also…

      I believe that I am fairly stable but as they work with my meds to reduce the Prednisone and increase the Cellcept I experience some weakness until things get regulated. It’s a slow process. I also have a tendancy to overdo it physically which really effects my strength and stability. I just keep fighting on and trusting God to provide me with the strength I need to get through each day and each new trial…

      Get better? I keep working at it!

    • Anonymous
      December 29, 2007 at 5:21 pm

      the human mind is the most powerful tool on earth…. anything and everything is possible if the mind is set to a specific outcome. if somebody asks me how i feel, i ALWAYS say “GREAT”…. because it just another affirmation of my positive attitude towards my cidp. i recognize it, i am aware of it…and i acknowledge it, but THAT’S IT…i dont feed it… i dont give it any energy….. i dont play movies in my head about “what might be” i have “right now” and thats ALL we ever have… and there is NOTHING wrong with right now. steven

    • Anonymous
      December 30, 2007 at 12:52 am


      You have a wonderful way of putting that answer! I am going to try and print those words, so when I get a bad case of the (WHAT IF’S) I can read your encouraging words.

      Thank You

    • Anonymous
      December 30, 2007 at 10:50 am

      When I first got CIDP I had hope of recovering or at least getting better. However after nine years and every treatment any one could think of I have slowly declined, so no, I don’t think there is much chance of getting better.

      I don’t want to discourage anyone from hoping to get better, many people do, and I pray that everyone including me will get well.