seizures

[Guest guest]

Yesterday was my third day on a half mg taper off Prednisone. I now

take 11 and a half mg every other day. For the first time I developed

seizures. I also began to suffer from the usual cranial neuropathy

symptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,

face and ear. Anybody else get these symptoms? Don't really understand

how I can be numb and in pain at the same time? I am going in to see

the GP today, but don't have much hope of any real info. Went back up

to my previous dose of Pred. and began taking Tegretol again (hello

fuzzy brain). Things are much better this morning but I am SO

frustrated. Taking Remicade was supposed to stop these flare-ups. Why

take Remicade and possibly suffer the serious side-effects if it isn't

working? Grrrrr. -

[Guest guest]

,

When it first happened, I took speech therapy but now I can deal with

it on my own. I really did not have a paralysis but more of a weakness.

I occassionally have some edema of the chords too. Do you seem to have

this when you are really in a bad flare? I seem to have it most when I

am worn out.

Take care.

Terri G.

>

> Cranial nerve issues paralyzed my right vocal cord and right side of

> throat in 2004. Couldn't speak even slightly above a whisper for 9

> months. Couldn't eat anything but oatmeal and scrambled eggs(lost 35

> lbs). A throat specialist put a video camera thingy down my throat and

> filmed the paralysis. It was called a FEST test. Once the neuropathy

> was under control I went to a speech pathologist for many months and

> learned to talk again, in a different way. Hard to explain. At any

> rate, whenever my neuropathy wants to flare up (like this week) my

> voice gets horse. I can lose it for days, sometimes weeks at a time. I

> don't panic anymore. I always expect it to come back eventually.

-

>