cont from previous thread

    • Anonymous
      June 8, 2009 at 4:22 pm

      I couldn’t get it all in so i will continue. It started in my hands and it got me down so bad i did not have any strength at all. They started me with therpy on both legs and hands.I now on short term dis. and also i do have afo for my legs. I am so sore i am not taking any pain meds. I would to know if anyone is working while they have this. I an approved threw june 18 09 and i don’t know what i am going to do. I am afraid that i would not get approved for ssdi and again i don’t know if i can do my job. sorry so long but this is first time. I was also on predisone. If anyone can help so would appreciate it. I can relate what everyone is having.

    • Anonymous
      June 8, 2009 at 11:55 pm


      I worked for about 2 years with CIDP but I am now off on long term disability.

      As far is IVIG take tylenol and benadryl to help with the headache also make sure you drink lots!

      Keep taking the tylenol and benadryl the day after treatment as well
      sure helped me with headache and sick feelings.

      Everyone seems to be affected differently with GBS or CIDP.

      All you can do is try to get the best treatment possible that works for you, and rest, rest,rest!

      If you overdo it you might feel more pain and swelling.

      Take care, hope you get some answers

    • Anonymous
      June 9, 2009 at 12:15 am


      Rhonda is right on spot with the headache remedy. If you ask them before you get the IVIG, they can help you. This is a pretty common situation with a simple solution. That is the good news.

      As I worked through your posts I noticed one thing common with us all. Diagnosis is complicated and messy. Treatment can be confusing and the approach will differ from Doc. to Doc. Not to say that one is better than another, or that any one Neuro is less successful than another. You need to make sure your neuro is capable and comfortable with CIDP, and you should be fine. I aklways recommend to everybody to read, read, read. The better you are informed, the better you can communicate with your Dr. And the more effective your treatment will be.

      As far as working, Really, most people deal with CIDP successfully. I mean that there is problems, but they lead fairly normal lives. There is complications, of course, but you can deal with it. You just have to learn what your limits are, and take care of yourself. Life with CIDP is certainly different, but you can do it.

      As far as disability, I am on SS Disability, but remember, although I get a check each month, it is probably half of what I made when I worked. I would rather work. As far as what you can do or not? If you are a good employee, most employers would rather keep a good ‘un, so keep yourself desirable as an employee. I could not do my previous job, or for that matter, I could not do any full time job. I just don’t have the stamina day in and day out.

      Each person is different.

      Pain meds differ from person to person. Early on in my cIDP journey, I used very little pain medication. Now I use more. Some people don’t need any pain med. It is really different person to person.

      Remember that CIDP is an autoimmune attack on your myelin sheath that surrounds your peripheral nerves. The intensity of the attacking cells, the sheer volume of attacking cells, the duration of an attack phase, the person’s individual response and so on will dictate different body reactions person to person.

      We are all different.

      But I sympathize with you and I totally understand your pain. I wish you were not here, but since you are, I hope that you can find some comfort by sharing your story, and from asking questions. and learning. Many people have been dealing with CIDP for a long time and have some valuable info.

      take care, I hope it works out
      Dick S

    • Anonymous
      June 9, 2009 at 1:43 pm

      thanks for the input Rhonda and Dick. I just got through therapy today and i am wore out. they do both upper and lower. I have 2 more visits to go then back to the nerou for a check up. This will ddetermine if he will let me go back to work. I want to go back, but concerned about my legs and hands. My legs hurt all the time even when i am setting in a chair. I am going to see if he can give me some pain med.