Cause of CIDP when steroids and IVIg don't work

I read a post here but can't find it now about determining which type of CIDP one might have when the two standard treatments don't work. I've always wondered if my diagnosis in 2001 was correct. At that time, I had five days of IVig and a couple after that. No effect at all. I was not tried on anything else until a couple of years ago when a mild relapse sent me to the doctor for steroids. No effect from those, either. I've never read of anyone as mildly afflicted as myself. I can have a slight relapse after a viral infection and I there is an exercise tipping point for me, but otherwise, I am practically free of the disease. I never missed a day of work; no pain or trouble walking, but I do experience fatigue and a feeling of moving through molasses and I don't have reflexes. Anyone else like me? And what did I read earlier about the type of CIDP or cell activity when standard treatments don't work? Thanks.

There are many diseases that cause a person to experience fatigue. One of the many is the thyroid, and then there is the heart and proper nutrition. There are different tests that are performed to determine CIDP. Did your doctor perform them all? Since IVIG does not work, think I would ask for another opinion. Ethel

I did have a widespread neuropathy which began with numbness and tingling. I don't have numbness and tingling now. My neuro at the time felt sure it was CIDP due to the absence of reflexes and EMG studies. I opted against the lumbar puncture, but he didn't think it was needed to confirm the diagnosis.

As a matter of fact, I do have Graves Disease (hyperthyroid). I read of a Japanese researcher who made a connection between Graves and CIDP. I do better with neuropathy when my thyroid medication is right.

I did get a second opinion from the chief neurologist at UT Southwestern. He confirmed CIDP but felt it was resolving. That was ten years ago. It has not resolved, but is very mild.

Even though I've seen four neurologists over the past 14 years, I've never been convinced that this is what I have or if I still have whatever it is. If I overdo exercise, I have a problem, but I wonder if it's due to past damage. However, I have had very mild relapses following stomach bugs. Overdoing exercise or stress causes a generalized weakness, but I"ve never had a problem functioning or walking. On those occasions when I can't identify what has triggered it, I will have a sensation in my face, then all the way down. My current neuro, whom I haven't seen in three years, said he has seen only one other patient like me who has such a mild case.

Thanks for the words of encouragement. No doctor has ever discussed variants of the disease with me. I'm hoping that 14 years of pretty good stability will mean no worsening of the disease. I think it's still in my system because of the mild flare-ups following a virus. That sounds like something more than residual damage. I'm very thankful to be functioning as well as I am. My best to you and all who participate in this forum.