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Mark

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Is anyone out there with PMA considering a lithium trial in light of the recent study in ALS? I am planning to start. I was going to start tonight but my local pharmacy did not carry the low dose tablets suggested. I will certainly let you know if there is any positive results.

Mark
 

hopingforthebest

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trial

Good luck Mark! Keep us posted.

I am hoping for something for my husband. Breathing this past week has been an issue. Respiratory person coming this week to start Bi-pap as he is having labored breathing, and cannot lay flat at all.




Patty
 

Al

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Hi Patty. Can you get a hospital bed on loan from ALSA/MDA. I find being propped up as well as the Bipap helps me.
AL.
 

Mark

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Thanks Patty. Will do. I won't be able to get the correct tablets until tomorrow.

Mark
 

Rae Ellis

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PMA/Lithium

Hello...I am very new to this forum, so forgive me if I use some kind of incorrect internet etiquette! My husband has PMA and was diagnosed in 1997...can you believe it! When they said it was "slow progressing", they meant it in our case, anyway. Thank God! How do you get into a Lithium study. We go to the ALS Clinic every six months and they haven't mentioned it to us. Do we just suggest it to the doctor's at the clinic or is it being conducted by a specific group? We try, literally, almost everything that is suggested to us (although nothing has helped). and are interested in this. I plan on going through the archives of this site to see what I can learn. Good luck on your plan and I pray you will have fantastic results. Rae
 

Al

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Hi Rae. The Lithium study has only been out in publication for a week or so hence you wouldn't have heard of it and you can find all sorts of links here or info at www.alsa.org.
AL.
 

Mark

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Hi Rae,

Any willing physician can prescribe lithium. It requires baseline blood work, baseline cardiogram, following blood levels and periodic check of thyroid function and kidney function among others. I have heard mixed responses to the Italian study in terms of scientific rigor but given the other drugs being studied in the US and their similar use in psychiatric conditions with appropriate follow-up I think lithium is worth trying. I have a variant of PMA, confined to my neck down to my hands. I have fasiculations but no weakness in the legs. There was a link to a site started by a California geophysicist whose father was diagnosed with ALS last August. should get you there. If not let me know. Good luck and I will keep you posted.

Mark
 
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Al

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Hi Mark can you check the link. It wouldn't work for me and you had Www so I changed the capital but it still won't work.
AL.
 

Rae Ellis

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Thanks, Mark and Al, for the information. We will speak to Jim's doctor about it. Jim is affected from his neck down to his feet. He doesn't seem to have any UMN involvement as yet. His hands, arms and legs are very weak and he tires VERY easily. When he falls down, it takes everything out of him for a day or two...so, I encourage staying in the chair. He breathes normally but is now experiencing some weakness in his voice. He can still stand and walk a few steps out of his chair (when it is raised) by locking his knees and using arm crutches. So this makes using the bathroom and showering easy for us. He is able to "drive" his chair to Starbuck's daily and has met some new friends there. I think he needs a break from my "hovering." We learn new tricks by trial and error and are blessed with everyday. I'm praying for you all on this site. Rae
 

Rae Ellis

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Lithium Study

Thanks for the link. I just emailed and asked if PMA patients might be included. I'll let you all know if I get an answer. Rae
 

Al

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No problem. ZenArcher posted what the link was. Just another example of people helping people here.
AL
 

Rae Ellis

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I emailed the woman listed on the site you provided and she emailed me back saying there were no studies regarding Lithium and PMA patients. She said she didn't think it would hurt any and to talk to the Dr. Asked that we let her know if Jim starts to take it so they can include him in the spreadsheet. We don't have an appointment with the Dr. yet and Jim wants me to do some research on Lithium treatment and the studies pertaining to ALS. I'll keep you posted. Hope you are all having a good day. Rae
 

ZenArcher

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I had posted this elsewhere but thought it might do you some good.

Arimoclomol a co-inducer of HSP-70. http://www.ncbi.nlm.nih.gov/pubmed/17656567
Lithium an inducer of HSP-70. http://www.ncbi.nlm.nih.gov/pubmed/16797496 and http://www.ncbi.nlm.nih.gov/pubmed/12732732

Minocycline appears to inhibit GABA production. http://www.ncbi.nlm.nih.gov/pubmed/3382463 also there was a study done showing that permethrin based pesticides at high enough exposures could cause a motor neuron disorder which mimics ALS http://www.ncbi.nlm.nih.gov/pubmed/17130437. Permethrin based pesticides work by inhibiting GABAA receptors
Lithium increases plasma and CSF GABA. http://www.ncbi.nlm.nih.gov/pubmed/6403063

Lithium inhibits glutamate uptake. http://www.ncbi.nlm.nih.gov/pubmed/9653192

Last but not least is oxidative stress http://www.ncbi.nlm.nih.gov/pubmed/17548157
 
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Al

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Good thing I figure I can trust you Jeff. I usually go to every link posted and read them to see if it is ALS related. Too tired tonight. Hope yur not trying to slip one by me. LOL. Careful, maybe I'll check tomorrow.
AL.
 

ZenArcher

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**Hurries to edit the Give Me All Your Money link**

Nope, they're all related if not directly to ALS then to one of the suspected mechanisms. The strongest influence for me taking lithium was the fact that it is reported to affect so many different mechanisms. I've always believed that any effective treatment would be a multi-pronged attack. I don't know if lithium is it but there is enough science behind it for me to give it a shot.
 
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