can't walk

[Guest guest]

Joanne,

I was going to read all of todays mail before I answered your letter, but

when I came across the one you answered to Ed's, I just had to stop and

answer now. You mentioned you can't walk because of MS. When I read that,

I remember telling the group on a couple of occasions that if I were

confined to a wheel chair that I would rather be paralyzed from the neck

down. I know that sounds crazy, but the thought of not being able to jump

up and walk (which you can't do), gave me a feeling of claustrophobia,

which would drive me crazy. Even if I am in a chair and am able to kick

and beat on my legs (so far, not the arms) after a while of moving and

squirming in the chair, I have to jolt out of the chair and walk, exercise

or get busy doing something. God help you if you can't do that. You will

definitely be on my prayer list. I will pray for you every day, because I

cry for you.

I can definitely relate to waking up with the deep bone electric shock

pulse description you used. !!! THAT IS RLS !!!. The way I describe it is

a crawling vibration that comes in waves and grabs like a slight electric

shock, and if I don't move, it moves me. It's not exactly a painful, but

more like a deep ache that you just can't reach. I have a Thumper (a

powerful massager that beats) which is great, and helps, but a hammer would

be better, you just can't hit hard enough, and when you do hit the place

you think it is, that wasn't exactly it, because it is soo deep it makes

you wonder if it is in the bone itself (something else to think about,

hmmmmmm). I believe the reason your misery is worse than most of ours, is

because you can't walk. If we stop to think about it, and couldn't break

it up by walking, the pain would be much more intense, we haven't had to

sit down and stay in one place. Walking is our only sure cure

(temporarily). That is why the RLS Foundations newsletter is called

" Nights " .

Joanne, since you are new to the group, maybe you don't know about the

Foundation. Type in rsl.org and the foundation's page will come up.

Also I suggest trying Mirapex, lots of good reports have come out about it.

Even though I'm on Permax and it's helping me somewhat. If it ever looses

it's effectiveness, Mirapex is my next choice. You didn't say what you

are taking????

I hope our Dr. Levin hasn't left just yet, Maybe he will email you

personally. I hope so. Hangeth in there Joanne, and remember I'm praying

for you, and asking that the others do the same.

June 65, Delaware