a new comer

    • Anonymous
      February 14, 2011 at 5:19 pm

      Hi all
      I am 33 y old ,just 2 weeks back diagnosed with CIDP. My neurologist has put me on azathioprine as I couldn’t tolerate Steroids.Still trying to adjust psychologically and adjusting my life style as well which seems difficult but no other choice.Can anybody help me regarding these issues;
      1-is there any cure for weakness and specially fatigue. I cant walk for 2-3 min and even without that i feel complete loss of energy and much fatigue.
      2- If ( hopefully) I achieve remission then whether there will be any residual symptoms.
      3- any will I be ‘medicine free’ after remission or immunosuppressants will continue.

      Kindly respond as this may help alleviating my anxieties.
      Kind Regards

    • Anonymous
      February 14, 2011 at 5:47 pm

      First, sorry you came down with this wonderful gift of CIDP. You will meet a lot of wonderful people here who can help you. In answer to your questions, you will find that many have made significant improvement since they were first diagnosed. However, each of us seems to react differently. The one thing that does stand out is that over taxing your mussels during recovery can do more harm than good. The “no pain – no gain mentality usually doesn’t work with CIDP. Recovery can be slow, but steady or slow and then plateau for a while.

      You said you were on azathioprine. Have you been on IVIg? How sever are you symptoms? You may want to explore stem cell therapy. They are your stem cell so you don’t have to worry about rejection etc.

      Things might look a little terrifying and disheartening right now. The unknown always is. As you gather more information and find out that others have been down this road and learn more about their journey, your outlook may improve. In the meantime, relax and welcome to the family

    • Anonymous
      February 14, 2011 at 5:56 pm

      Welcome to the forum. You will not find a more knowledgeable and supportive group of people than the individuals who participate here; you are in the right place.

      First off, you must understand that CIDP, though in general being a disease afflicting us all, is also unique to each of us in terms of its presentation, progress or remission, treatment efficacy, and recovery or lack thereof. Generalizations are possible, but not usually very helpful or accurate with regard to any specific case.

      1. Weakness or fatigue to some extent is present in almost all who have CIDP. It often can and does improve, but sometimes it doesn’t, or may improve and then worsen with flare-ups, stress, lack of proper rest, etc. I don’t know of any “cure” for fatigue (or for the underlying CIDP itself), but eating a well-balanced diet, getting at least some exercise when possible, getting enough rest, and stress management all can help with fatigue and overall weakness.

      2. It really is impossible for any of us to predict whether you will reach a state where you are in remission, and if so, whether and to what extent you will continue to suffer with any residual symptoms or limitations. Your doctor at this stage probably can’t either, though this is certainly something you should discuss with your physician.

      3. Again, this is impossible for any of us to know. I do know that there are individuals out there who are in long term remission, who are not on any medication, and who are basically fully functional with little in the way of symptomatic issues.

      I apologize that I can’t be of more assistance. Please keep in mind that we are all in this together, and that we will support you as you go through this disease process. Do not hesitate to post your inquiries, concerns, or comments. Personally speaking, I know I feel better when I can help others who are suffering from CIDP. I was diagnosed in April of 2010.

    • Anonymous
      February 14, 2011 at 10:12 pm

      Welcome to the forum Adnan. Just wondering about the azathioprine as being your only treatment. My understanding is that if it is going to work, it takes at least six months to show any benefit. Perhaps that is a question to ask your neurologist. Since you couldn’t tolerate the steroids, perhaps IVIG might be something to consider.

    • Anonymous
      February 20, 2011 at 6:17 am

      Dear Jim, Goodney ,Laural and others
      I am really thankful to you for your replies.Symptoms are creeping slowly and weakness in hands and legs is crippling but the parasthesias are slightly better although fingers are numb.I am a student on scholarship here in Australia so my Health Insurance is limited and procedure to get approval for IVIGs is cumbersome thats why doc started azathioprene. Secondly , my neurologist wants to start with basics and will then proceed to IVIGs although in Australia they somehow prefer Plasmapheresis to IVIGs.
      Anyhow i am glad that i am also a part of this family which is indeed responsive and caring.