Hello from Mississippi… CIDP 7/03

Hi all! Sharon here. I joined recently and probably should have joined sooner. Just want to say hi! at this point with a brief story of my own. Had symptoms in July ’03 of “heavy head” feeling, thought I was going to have a seizure, had the first one in 12 yrs that monday before. The pain in my feet and arms/hands was tolerable but I was weak and couldn’t walk without assistance. The docs in ER didn’t know what it was. My phenobarbital level was normal(been on it for epilepsy since ’75). My neuro was out of town and I refused to be seen by anyone else. Went home and finally got admitted by my neuro on that friday. He said GBS at first. EMG was normal tho and he didn’t do a tap. Put me on Solumdrol IV right away and within 24 hours I was feeling better and able to walk without assist. Went home on Prednisone with weaning to take place over a week. Within that week I relapsed(?) or as neuro said…was still same episode but a step back for the 2 i’d taken forward. Was in ICU with progressive paralysis of bilateral extremities and was on watch to see if it moved into my respitory muscles. The Solumedrol was introduced again and I did respond again.. slower than the first go around but i did respond. After being on that for many days and going home again and doing PT for 2 months I got back to “normal” life. Neuro said I had GBS “like” syndrome with CIDP but said that I had a mild case. So for the last few years I’ve done fairly well with mild numbness in parts of my legs/feet,hands/arms and tingling n burning too. I’d had one episode of the whole weakness thing 3 years ago on the anniversary of the first time I’d been hospitalized for this. Well I had a bad episode yesterday/last night with tremendous weakness, difficulty walking, head spinnig/dizziness. Am waiting to get into neuro for a good check up. I don’t recall the neuro really telling me a whole lot about CIDP or if i would have any episodes at all. He seemed to be at a loss, like i’ve read on here about alot of you guys. I’m glad to read your stories. I’ve met Dell’s mom… it shocked me when i saw her with dell because I’d never met anyone else with this condition. Anyway, i’ve gotten tired and need to rest. thanks for listening. I had to take off of work today.
Sharon/Nyte
CIDP 7/03