Old 02-13-2008, 05:03 PM #46 (permalink)
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Al, when i was young, i was taught, it was none of what you hear and 1/2 of what you see ...lol....same ending.

I know Jeff got this too. It seems to be pretty legit.....

This all seems to good to be true yall. Cautiously optimistic as Jeff said.
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Old 08-26-2008, 04:51 PM #47 (permalink)
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Question Interested In Lithium

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Originally Posted by zenarcher View Post
i Walked Out Of Clinic Today With A Prescription For Lithium Carbonate 150mg 2x/day And Blood Work Every Two Weeks. I Had Sent The Report To My Neuro As Soon As It Posted Along With What I'd Like To Do And Why And Here We Are. I'll Take The First Dose Tomorrow Morning And Do The First Blood Work Next Week.
I Am Was Wondering How You Are Doing Since You Started Lithium. Have You Had Many Side Effects? I Am Going To Be In A Study This Oct. For Lithium And Trying To Get Any Info I Can.
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Old 08-27-2008, 07:30 AM #48 (permalink)
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I was on lithium for almost 3 months and had a level higher than 0.4 mmol/Eq for over 2 of those months. In that time I developed speech issues and weakness in my legs. I do not know if this was simply disease progression or due to the lithium but I wasn't willing to take the chance so I quit lithium.
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Old 08-27-2008, 07:41 AM #49 (permalink)
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Default Riluzole/lithium

I was diagnosed with ALS last month. My doc would like me to start the riluzole/lithium regimen as soon as my blood work is back. I've read the Italian study (you can find it here if you would like to read it - http://www.pnas.org/content/105/6/2052.full) and have a few problems with it. I think the biggest problem I have is that it really does seem like a big risk (known and unknown side effects) for a small return (a month or two longer life). Don't misunderstand, I want to be around as long as possible, but I'm not sure these drugs offer me the best quality of life.

I would welcome others input on this.

Thanks.

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Old 08-27-2008, 07:47 AM #50 (permalink)
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I think by now we would have heard good things about Lithuim from people n the forum.
Lithium so far have not convinced me it works


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Old 08-27-2008, 09:37 AM #51 (permalink)
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I'm staying on Lithium. No side effects. I've progressed in my legs and slowed progression in my hands and mouth. No reason not to stay on for the year of the study at PLM.

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Old 08-27-2008, 11:14 AM #52 (permalink)
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I can't tell if there's been any benefit but I'm staying on Lithium for now. No reason not to for me since there are no major side effects and it's safe and inexpensive.

At the 3 month mark, Karen Felzer's analysis of the grass-roots Lithium study are not encouraging. But it's still early. This is a marathon.

-Tom
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Old 08-27-2008, 05:10 PM #53 (permalink)
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I and a few others from my clinic quit before 3 months due to accelerrated symptoms.

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Old 08-27-2008, 07:46 PM #54 (permalink)
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My hubby also quit taking Lithium due to accelerated symptoms. He took them a month, and that was it, things were crazy for a couple of weeks afterwards, but things have gone back to somewhat "normal" in comparison to how things had become while taken the lithium.
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Old 08-29-2008, 03:11 PM #55 (permalink)
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Default Lithium Not For Me

Tried for 3 months, levels over .4 for at least 2 months. Did not slow and may have slightly sped up progression.

I'm as hopeful as the next for some breakthrough, but Li won't be it; too many above feel like me. Things feel pretty hopeless.....
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Old 09-06-2008, 01:48 AM #56 (permalink)
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My husband was diagnosed with ALS in December, 2007. It began as a slight difficulty in speaking and progressed to severe bulbar symptoms and weakening of the right side of the body. The well-known ALS Center at a famous medical center in our area had not heard about the Lithium study. Our older son sent us a link to the Italian study. He got it from a physician friend of his. While 'our' ALS Center had not heard about it, our own primary care physician visited with us and brought a colleague who is a neurologist and he HAD heard about it. They thought we should try it.

My husband has been on the Lithium as well as Rylatek since July of this year and we are hopeful. We did not want to wait for 'our' ALS Center to start 'their own clinical trial since those things take from eighteen months to two years and we may not have that much time.

Once 'our' ALS Center heard that we were "on" Lithium, they asked that we keep them posted and of course we have my husband's blood tests and EKGs as required, since Lithium has, like all drugs, side effects.

I pray for all of us ALS families and share your hopes, fears and dreams for a cure some day. After all, they once called Polio, Malaria, Smallpox, Tubercuosis, Diabetes, and so many other diseases untreatable and terminal.

The only good thing I can say about this illness is it give you time to find out who you are, how much you can take, and especially, who your true friends are and who are the fake friends who do not or cannot offer help.
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Old 09-06-2008, 06:36 AM #57 (permalink)
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Quote:
Originally Posted by tmasters View Post
I can't tell if there's been any benefit but I'm staying on Lithium for now. No reason not to for me since there are no major side effects and it's safe and inexpensive.

At the 3 month mark, Karen Felzer's analysis of the grass-roots Lithium study are not encouraging. But it's still early. This is a marathon.

-Tom
I saw my italian nuero in london yesterday..he was in Rome in August with the doctors in the italian trials....it seems they are not TOO convinced by it but they have yet to collate all the final information and write up the findings which should be published fairly soon. At present lithium in not allowed in the uk for als, but they will look at the final italian results and see if they want to do a similar trial. The mnd association are going to run some trials in the UK soon but we dont know what the trial is about yet.
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Old 09-08-2008, 10:47 AM #58 (permalink)
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Quote:
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I saw my italian nuero in london yesterday..he was in Rome in August with the doctors in the italian trials....it seems they are not TOO convinced by it but they have yet to collate all the final information and write up the findings which should be published fairly soon.
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
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Old 09-08-2008, 11:24 AM #59 (permalink)
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I would be interested to know how far along those are who are taking Lithium that are not experinecing accelerated symtoms and those who are? I have been off for awhile and am interested as there are others in town here with ALS that are asking. As for my husband his symptoms speeded up very quickly and I believe taking it put him over the brink after a month and a half.

Cheryl
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Old 09-08-2008, 11:55 AM #60 (permalink)
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Ill just tell you my progression. I started taking lithium in Jan. and was over .4 within a few weeks so have about 7 months at the target level. MY Functional Rating Score has declined from 37 to 26 in that time with a big drop in the last month and a half. My speech is terrible and I'm using a speech generating device part of the time. My ability to walk is heading south and writing is very poor. Surprisingly, and thankfully, I'm not having any breathing problems. In July my FVC was upper 70s and I don't think it has changed. So, do I think the lithium helps? Nope, and Ill probably quit taking it when the current bottle runs out.

What about others? Is anyone being helped? And when will someone really find a cure? I'm still praying.
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