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chefdeborah

Distinguished member
Joined
Oct 23, 2009
Messages
158
Reason
PALS
Diagnosis
10/2009
Country
US
State
Georgia
City
Peachland
I have two major questions. A friend of mine keeps sending me all this stuff on "cures" for ALS. She just sent me one that says if I take Lithium something or other it will slow the progression of my ALS. This study was done in Italy. Have you heard anything about it?

The other question is this: Is it true that the place that you have the most twitches and cramps is the first thing to go? My hands and arms are twitching like crazy and in the past few days I have had lots of cramps in my hands. Of course, I crochet like crazy...all day! I am wondering if crocheting is not good for me.

What do yall think? I am going to send your answer to this friend of mine that keeps sending me this stuff....I am getting kind of tired of it..but she means well.

deborah:grin:
 
Deborah,

I read about the lithium as being a way to slow down the progression of als. I think I also read somewhere that clinical trial did not show marked inmprovement.

Your hands will cramp if you over use them, try to stretch your hands and your arms out before you crochet.

Judy
 
My husband did the the Lithium thing and is still taking it. When he stops, he gets terrible cramps. He wants to continue to take it just for that reason. As far as slowing down ALS - don't know. You can do a search about this here, on the forum, and on Google.

I can only tell you of my husband's experience. Wherever the twitching and cramping started, that was where the atrophy has followed.

I wish you luck and continued crocheting!
 
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Deborah,

A thorough, large trial conducted through the Patients Like Me site in 2008 showed no evidence of slowing of ALS by lithium. The trial was rigorous. I was part of it. I took lithium for 9 months and my own records also showed no slowing of progression. After the PLM trial was completed and written up, the ALS Society of Canada spent a million dollars and repeated the trial and much later came to the same already demonstrated result. Sorry.
 
Chef! Glad to see you back online! Everything I have read on the Lithium is that it doesn't help :[ Web would agree with brooksea about the twitching. Judy had good advice about the stretching and there is also medication to help with the cramps/spasms if you need it! hugs, Kay Marie
 
Hi Deborah, I asked my nero the first time i went to see him about lithium? He said that he would not perscribe it at this time. Not enough information that is possitive ...... How are you doing these days? i knit everyday. I notice if my hands get cold they will start to cramp or if i knit for too long. I guess moderation might be the key to knitting? My nero also told me that knitting won't hurt the muscles and to keep on knitting.... Hugs, to you today, Linda
 
I'm not sure about lithium, but where my mom experienced twiching first, that was the first to go (in her case her right arm and hand) Whenever the twitching started in other areas the atrophy was soon to follow. she is now confined to a hospital bed.
 
Deborah...

I've heard a number of times that the twitching is generally related to what goes first. So yes I think it's a good indicator.

For me, twitching started in my arms, and that's what is going first.
However, I also had some time where my neck was twitching alot... but that went away for now, and don't notice any significant weakness there.

So I'd take it as a general indicator, not at 100% guarantee what's going to happen next.

Brian
 
I looked into the whole Lithium thing for my dad as well. It started as a small study in Italy in which the results with that small number of patients that used it seemed to have good results. So good that they did studies of it both in Canada and the USA last year. Unfortunatly the results from those trials were not the same. They were inconclusive. My dad wouldn't take Lithium if I begged. (but then again he wont take Rilutek either) The way I figure it, it actually did help some people. And with this disease some things help some people and it doesnt help others. So, in my opinion, if it doesnt hurt you, (and I know Lithium does not cost much ) I would be taking it just on the off chance that I would be one of the lucky ones it helps. Just my opinion.
Hugs, Kari
 
Hi Deborah, According to my doc at Hopkins the lithium study was a bust. I don't know too much about twitching but I would say if you love to crochet, keep doing it. Stretch out your hands and fingers often, and rest when you need to. Good luck! Jennifer
 
I am doing okay. I just had a three week bout with with bronchitis. When I crochet, I crochet all day. I can't quit. I am afraid I will not be able to for long and I have so much to do. I have an online crochet group, Project Hugs, a yahoo group. We do charity work. I have been a part of something like that for 10 years, ever since my daughter died. I feel like if I can't crochet, it is not worth living. And not being able to cook...well that is just NOT RIGHT!
I guess I will have to rest more often....

deborah
 
This really upsets me! My twitches are mostly in my arms and hands. I have some in my legs and other places, but nothing like my arms and hands. I can't even think about not being able to cook and crochet! And to not be able to hug my husband and children and grandangels! I can't think about this.....

deborah
 
As far as the twitches, I have heard some people say that about it being a sign that that part of the body was going to go next. But that is not how it has worked for me. I have been twitching all over but only have some weakness in my right leg and right hand. The twitching has never been any stronger in those parts of the body than anywhere else. Now maybe my whole body is going to shut down tomorrow, you never know! :) But the point is that everyone is different and your twitches don't necessarily mean anything specific.
 
SOmetimes it seems to me that the twitching increases after exercising. I wonder if it might be an indication when I'm overdoing it.
 
When I get tired at the end of the day is whenI twitch most. Mine started in my chin and in my left hand. I see a lot of muscle loss in my hand and it did start first. Also it is getting weaker. So we will see. i feel like you Deb, Not being able to hug the people i love and put my arms around my husband .. The worst... Not being able to knit will be a close 2nd.. I love yarn and making these things for my family and friends. i can tell you it is a year since my diagnosed and I am still knitting away....That keeps me going and keeps my days good.... Hope we can keep doing these things for a long while... Hugs, Linda
 
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