I apologize for hijacking this thread. You are so very lucky to have a doctor who treats a person and not just the paperwork. Predinsone is no walk in the park but if it works it is do-able, I wanted IVIG or predinsone and my doc just want me to take nothing, sit around and be evaluated every 4 months while my legs just wither away. I am sick of docs that only concern themselves with tests and never really evaluate the person sitting in front of them.

I have been given about a dozen diagnoses by my neuromuscular doc. One time it is CIDP next visit she says she never told me that (I take notes) then toxic neuritis and so on. ***She nixed all treatment because my tests were negative*** altho' she says they could convert to postivie somewhere along the line. Within 1 year I went from a foot drop to only able to walk about 10 steps at a time with a walker. I am mostly in a wheel chair. I suspect I have an autoimmune process since I went through 3 years of wildly fluctuation thyroid levels from Grave's disease. My presentation is of autoimmune, flaccid feet and lower legs, weak legs.

I insisted she do something when I saw her last Sept. I could no longer take the pain and it caused me to have problems walking. She gave me a 12 day course of a methylpredisnone dosepack (2 packs used together taper down). In about 2 weeks I was able to move 4 toes on my very flaccid right leg for the first time in months and the muscle contractions were much stronger. I started to get some muscle regeneration on my atrophied lower leg. My severe back pain greatly reduced. BUT....she did not continue the prednisone. Then I had the clot in my left leg, had to rest for 3 week with my leg elevated, and I lost all that I gained. She says she'll talk about it on my next visit which was bumped back to mid Jan.

I feel that my response was almost diagonstic for autoimmune. My internist was, using his words, appalled at my treatment or lack of. They insisted I see another neuro and made the appt for mid Dec. They also got me an appt with a spine center to evaluate the pressure on my spinal cord at t6 t7. All my other docs say I look like GB, but that is a chronic form of CIDP.