Re: Still a new member!

[Guest guest]

Patsy:

You can come on this line ask questions of any one of us. There is no

separation, between us. It's just that some of the people prefer to

keep the line special for medical purpose, and we feel it should be for

both.

I have had PLS for over 20 years, and never had anything like you

described, but I am sure others have, and will tell you what there

experiences have been. One thing i have learned over the years that

this disease varies from one person to the other, and we all approach

it differently, as you will learn as you get to know us better.

My strategy is to listen to my body, and it will tell me what is good

for me and what is not. I happened to watch a video of myself last

evening, it was my husbands 70th birthday party (that was 6 years ago,

and I was surprised to see me than and now, and there is very little (if

any) difference in my condition. So I must be doing something right. I

try not to get stressed out, nor do I over do (at least I try). My

doctor says that I am the best judge of what works for me and what

doesn't. I went to my neurologist last year, and he doesn't need to see

me until the year 2001 (unless I need him).

So that is my approach, sure hope you reach a levelling off point and

try not to worry. Anytime I can help, please do not hesitate to contact

me.

Good Luck!

Rita

[Guest guest]

--- Hi Patsy, I have had pls for 16 years and was finally diagnosed

about 2 years ago. I had those jerks that you describe for quite

awhile until I was diagnosed and my Neurologist put me on Baclofen.

that really helped me. I think what happens is the muscles twitch and

than go into spasm. I would be so bad I kicked my husband a few times

in bed at night. If I forget to take one I sure can tell. I would ask

your Dr. about them. Welcome to the group you will find lovely people

here and they have good things to say that you will find out you

really relate to. Ask anything you wish. CarolynIn PLS-

FRIENDSegroups, theromers@a... wrote:

> Hi Everyone again, I am still trying to get the hang of how to

> communicate on the website. When I first e-mailed Reyerse

and

> asked about a PLS website he answered that there were two sites for

> chatting with other PLSers. One was for discussing PLS or ALS

items

> only and the other for general chit chat. Can anyone straighten me

> out as to how to reach them seperately? This one seems to be for

> both. Being a new member my questions at this point are PLS only

and

> boy, do I have them. I was awake all night last night because my

> legs and arms and hands were vibrating and my hands would then

become

> numb. I could regain feeling by exercising them but what a night.

> By vibrating I don't mean that you can see the twitching but it is

> not a little tingling feeling. It is a definite jerking feeling.

I

> hope I don't sound like a cry baby for I realize I am much

healthier

> them so many but would like feedback from others if they have

> experienced this.

>

> Thanks again--Patsy