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![]() | #46 (permalink) | |||
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Senior Member Join Date: 2006 City: Carencro State: Louisiana Country: US Interest: I am interested in learning about ALS/MND. |
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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![]() | #47 (permalink) | ||
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New Member (Say Hi) Join Date: 2008 City: RICHMOND State: VA Country: US Diagnosed: 11/2005 Interest: I have been diagnosed with ALS. | Quote:
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![]() | #48 (permalink) | |||
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Senior Member Join Date: 2007 City: McEwensville State: PA Country: US Diagnosed: 02/2007 Interest: I have been diagnosed with ALS. |
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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![]() | #49 (permalink) | ||
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New Member (Say Hi) Join Date: 2008 City: New York State: NY Country: US Diagnosed: 07/2008 Interest: I have been diagnosed with ALS. |
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. Cindy | ||
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![]() | #50 (permalink) | ||
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Very Helpful Member Join Date: 2006 City: lopatcong NJ State: newjersey Country: US Diagnosed: 7/1999 Interest: I have been diagnosed with ALS. |
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 Pat1 | ||
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![]() | #51 (permalink) | ||
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Member Join Date: 2007 City: Mentone State: CA Country: US Diagnosed: 12/2007 Interest: I have been diagnosed with ALS. |
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. Sharonca | ||
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![]() | #52 (permalink) | ||
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Senior Member Join Date: 2008 City: Anaheim State: California Country: US Diagnosed: 08/2008 Interest: I have been diagnosed with ALS. |
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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![]() | #53 (permalink) | |||
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Moderator Forum Moderator Join Date: 2004 City: NW of Toronto State: On Country: CAN Diagnosed: 10/2003 Interest: I have been diagnosed with ALS. |
I and a few others from my clinic quit before 3 months due to accelerrated symptoms. AL. | |||
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![]() | #54 (permalink) | |||
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New Member Join Date: 2008 City: Lula State: Georgia Country: US Interest: He earned his wings 12/26/2012 |
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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![]() | #55 (permalink) | ||
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New Member Join Date: 2007 City: novato State: ca Country: US Diagnosed: 06/2007 Interest: I have been diagnosed with ALS. |
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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![]() | #56 (permalink) | ||
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New Member (Say Hi) Join Date: 2008 City: Berea State: Ohio Country: US Diagnosed: 12/2007 Interest: The above date is date my husband was diagnosed |
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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![]() | #57 (permalink) | ||
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Member Join Date: 2008 City: London State: England Country: UK Diagnosed: 03/2008 Interest: I have been diagnosed with ALS. | Quote:
jennifer51 | ||
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![]() | #58 (permalink) | |||
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Very Helpful Member Join Date: 2006 City: Newfoundland State: NL Country: CA Diagnosed: 10/2000 Interest: ALS dx in 2000; changed to UMN-dominant in 2012 | Quote:
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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![]() | #59 (permalink) | ||
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Member Join Date: 2007 City: salmon arm State: b.c. Country: canada Interest: I have been diagnosed with ALS. |
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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![]() | #60 (permalink) | ||
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New Member Join Date: 2007 City: Somewhere State: IL Country: US Diagnosed: 00/2001 Interest: I have been diagnosed with ALS. |
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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