Welcome Arlene

[Guest guest]

Arlene,

Dolores spells her name the way I have it in this sentence. Guess she

feels the way about it you would if someone always called you " Darlene. "

Welcome to the group everyone enjoys but is sorry to belong. We have all

hit the lottery, so to speak. This is such a rare disease, more people

died from SARS this past year than have PLS. (48.7% of all statistics

are made up on the spot.) I guess I don't feel lucky in that respect,

but do feel lucky that my PLS is slow progressing. Interestingly, my

first diagnosis was also Stiff man's, then was changed to Conversion

Disorder. Both were wrong, but Stiff man's was closest. The meds I was

started on were, as you stated, the same for PLS. I was on diazepam

10mg/day and was being weaned off it too rapidly and began having

paroxysmal spasms. They are a seizure like spasm, but I am totally

conscious while having them. I can hear everything being said and can

think clearly; I just stop breathing and my whole body goes into spasms.

I look unconscious and several people at the State Hospital where I work

still believe that I have seizures, including some doctors who have seen

me have them. My neurologist can't believe they think that and wonders

if any of them have actually seen an epileptic seizure. The two are not

similar and the one I have has a greater potential for damaging the

brain. Guess that's a byproduct of PLS and diazepam. I haven't had one

for at least 2-3 years now, thank you, God.

This group is full of information. You will find some research mentioned

here, a lot of funny stories involving PLS and how we deal with it and

the people around us. You will meet caregivers who tell how it is to

care for someone with PLS. You will also hear some inspirational

stories. We have it all. Just stay tuned.

Again, welcome.

Mike Gray

Logansport IN