I just read the lithium study

[vmd]

I've seen a few articles here and there. Is PubMed information free or does one have to subscribe?

 

[ZenArcher]

The abstracts are free most of the full articles have to be paid for. That is unless you have access to an online library from a college or something similar.

 

[Al]

Hi Shawn, welcome. I do see Zinman and he sent me an email. They are probably going to be doing the large phase 2 trial there. Paperwork has to be done first. They have to have parameters set up so that everybody starts on the same page so they can properly track it all. I would expect most of us will be asked if we want in it.
AL.

 

[Shawn]

ok, thanx. i wonder how long paperwork takes!
funny how impatient we can become!
:-D

 

[cheryilyn]

I asked my dr. about lithium awhile ago and she said no proof and too many side effects.

 

[ZenArcher]

Let me preface this by saying I can understand a doctors reluctance to prescribe lithium off label at the same time though I wonder how many of those same doctor have taken part in drug trials for ALS. Arimoclomol for instance had only been tested on mice so its effects on humans were unknown but doctors gave it to patients. Minocycline had been used in humans but not for ALS but it was given and increased the progression of symptoms by 29%. Lithium has been used for years and the first 44 were the test subjects. It has been tested safe in humans and shown to be safe for ALS at least over a 15 month period. I will admit the test needs verified but it shows with 95% certainty that lithium increases lifespan > 6 months over Rilutek alone.

Again, I'm not trying to argue for or against lithium. I've made my own decision. I'm just thinking out loud here

 

[dona jean]

i just read the lithium study

i talked to the nurse practicioner at my neurologist office yesterday...she said she hadn't seen any of the studies and would not prescribe the lithium, but she promised me she would research and get back to me. she was totally sceptical about getting involved because of the minocycline deal where it accelerated the als instead of slowing
it down, and she says the lithium has to have a good track record before they would prescribe, blah blah blah blah blah!
i have sent a bunch of info to my gp who is very thorough and i know she will get back to me real soon, she was amazed as i am her first female patient with als, which i think makes her more interested.

i will know more when i go the u va for my clinical appt on wednesday, but i am thinking
it is time to find new neurologist, i hate dealing with doc-want-to-bes (nurse practicioners) anyway, and after i was diagnosed my neurologist turned me over to her
as if he was done with me.

sorry for rambling! thanks to anyone who read this, guess i needed to blow off steam!

 

[ZenArcher]

Dona forgive the upcoming fervor but WTF! I would politely tell your neurologist and his nurse practitioner to copy all your records for you and have a nice life. Talk with the ALS Association chapter in your area and see if they can recommend a neuro in your area. There is no way in hell I would let them get away with sending me to a nurse practitioner. Sorry that just struck a nerve.

 

[dona jean]

i just read tghe lithium study

thanks jeff!
i feel that way, i already told my husband that i am gonna find a new neuro
he agreed, he didn't like them either!

 

[sharonca]

Dona - What I did is copy all the research from the site and took to my doctor's appt with me. He then had the research right there. I was more fortunate than you in that he was already willing to be receptive to what I had in mind. But I was prepared to answer any question with paperwork that he could easily verify. This was my GP. My neuro called me and when I explained my plan he asked for the web site and wished me luck. Be prepared and go for it!

Sharonca

 

[northerngirl]

My feeling are any neuro that deals with PALS who has not heard of the Litho study by now, is not very diligent with what is going on out there. More importantly if you ask and they don't take an genuine interest in what you are saying, and are not interested if looking in to it (supportively), then maybe it time he/she retired. :-D. It's your life not theirs that you questioning.

 

[dona jean]

i just read the lithium study

thanks you guys for you input.
hopefully when i get back from my clinic visit on wednesday, i too will be on the program.
thank you all for your advice

 

[northerngirl]

I stand corrected.

Previously I said Mom had go to the ALS clinic last week in Vancouver, And apparently she meant they told her may of there PALS were using Rilutek with no notable improvements. I asked them about Lithium And they said they were looking in to it and probable would give her a prescription. I am waiting for a call. Mom was over whelmed at the clinic and missed that one.

 

[Jamiet]

You scared me there northerngirl...

 

[Al]

YouTube- Improving PALS

Jamiet sent this to me. When I was a boy my dad told me don't believe everything you read and only half of what you see. That was before Photo Shop and being able to alter pictures. I have no idea if this is legit but it is great if it is.
AL.