Old 09-08-2008, 12:47 PM #61 (permalink)
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I too have been taking Li carbonate since January and reached the >0.4 level in the spring. I can see no change in my progression rate and my symptoms have continued to worsen, particularly in my hands and legs although not enough to change my ALSFRS-R score which has remained at 32 since January. My progression has always been slower than average. I am waiting for the 6 month Li report which I expect to be out soon. If it shows no value in the Li, as the 3 month report did, I will likely drop it.
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Old 09-08-2008, 03:32 PM #62 (permalink)
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Quote:
Originally Posted by John1 View Post
Hi Jennifer,

I'm not clear from your post as to what study your neurologist is referring to when he says they will be writing up the findings soon. Is it the Italian study (already published) or the patient-run one, mostly in the US and Canada?

John
I dont know..he just said he was in rome (in August) with the doctors and patients on a lithium trial...could it be a follow on .? My neuro is italian, which is why I went to him..he has a wonderful reputation and I thought he would be more interested in the italian trials, so if anything good came from it, then I thought I could be closer to getting help. The neuro who DX me is such a bighead and would not consider anything I put to him...he has a dreadful reputation with most of his patients and healthcare workers. so at the moment,sorry I cannot clarify anything. Likewise I know that the mnd association are trying to run a trial in the uk...we are currently fundraising for it...but I have no idea what that one is about yet
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Old 09-09-2008, 12:43 PM #63 (permalink)
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Jennifer, perhaps it is a follow-up to the initial results that came out late last year. It would be interesting to know how the original group of Li patients is doing now. Please keep us posted if you hear anything.
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