LITHIUM: Seeking HELP!

[opczynski1944]

****HELP! Please help! I am a recently-diagnosed ALS patient & the father of a family of four in SOUTHERN New Jersey (ZIP code 08065) near Philadelphia.

Already familiar w/the Italian LITHIUM trials, I am DESPERATELY trying to locate a doctor in my area willing to dispense LITHIUM for ALS (bulbar onset-speech, apparently familial). Thus far, I have spoken w/ FOUR area neurologists who say almost exactly the same thing:

"CAN I prescribe lithium? Yes. Will I? NO!"

All want to WAIT for MORE proof ... while the disease progresses.

Is there anyone out there kind enough to let us know of a reputable doctor in SOUTHERN NJ? Or in the geographic area? PLEASE respond if you have an answer.
Thank you!

 

[sharonca]

My experience is that my general practitioner prescribed for me when the neurologist would not. I printed out all the information I could find from the international spreadsheet and took it to my doctor. He knows me well and did the Rx right away. He is also monitoring me. Maybe you could try that route.

Sharonca

 

[Al]

People here have gone the GP route as well. Roughly 30% of the Neuro's here have said they will not prescribe it until the official trial starts. Personally, I went off it after 3 months. Side effects and my family thought (as I did but was reluctant to admit) that I was getting worse faster. Read the Italian study and read between the lines. I know we are all grasping at anything that will help us but be wary.
AL.

 

[tmasters]

Ditto to what Sharon said.

I got a 3-ring binder and printed out materials from the Italian study and the ALSTDI information including graphs and dosing information. Put the whole thing together with tabs and headings, etc. All the work sort of reminded me of a high school project. I probably went overboard. Okay, I DID go overboard.

I went to my General Practicioner who seems open minded and knows me somewhat. He wrote the Rx and is monitoring my blood level.

-Tom

 

[Kevinski]

lithium

Cannot understand why the neurologist would not dispence the lithium,My neuro guy who is very cautious and took a long time to Ddiagnose me.When info came out on that study I had a meeting with him shortly after.I asked him he had als what would he be doing ,he said he would be mirroring the study ,so have been on Lithium and ritulek combo.I have not progressed anymore which is good.My speech is the main problem with me ,so if this cocktail of meds can keep me going as is for longer ill stay on this regime.I respect the neuros opinion and if he thinks it good to be on these meds thats good enough for me.Take care and hang in there...Kevin from Calgary Alberta Canada

 

[patricia1]

My speech was my only problem for 7years and I am not on lithium I think you wouldnt have progress with or without I dont think Lithium works There is no data except the one out of Italy and my nuero said it was not a real study and would not give it to me. I have not seen any proof it works yet! Thats my opinion. There is no cure yet Period!

Pat1

 

[sharonca]

My experience has been that I saw a difference after two weeks, have not had any side effects and since it is inexpensive - why not? The data I have recently read stated that Li shows progression slowing and stopping on the Italian study after 6-12 months. For me I see no reason not to take and no reason to stop. If my experience were different I might stop but after four months I'm happy.

Sharonca

 

[sandykritch]

lithium

Are there any PALS that live in Florida that their neuroligist have prescribed Lithium?

 

[crystalkk]

Hi,

Sorry about your diagnosed. Who are you seeing for your ALS is it an ALS specialist? I live in philadelphia.
I am under watch no diagnosed, but I see Dr McCluskey at Pennsylvania Hospital. I don't know what his opinion on lithium is, I keep forgetting to ask.

 

[Shane the Pain]

from Shane the Pain

I am an ALS patient in SD CA. i had the same trouble, my ALS doctor wdn't perscribe it so i finally got my primary care Dr. to do it. i'm only taking it once a day as i have experienced alot of morning nausea, which i'm not sure is atributable to taking lithium or not. keep pushing brother !

****HELP! Please help! I am a recently-diagnosed ALS patient & the father of a family of four in SOUTHERN New Jersey (ZIP code 08065) near Philadelphia.

Already familiar w/the Italian LITHIUM trials, I am DESPERATELY trying to locate a doctor in my area willing to dispense LITHIUM for ALS (bulbar onset-speech, apparently familial). Thus far, I have spoken w/ FOUR area neurologists who say almost exactly the same thing:

"CAN I prescribe lithium? Yes. Will I? NO!"

All want to WAIT for MORE proof ... while the disease progresses.

Is there anyone out there kind enough to let us know of a reputable doctor in SOUTHERN NJ? Or in the geographic area? PLEASE respond if you have an answer.
Thank you!

 

[gifogif]

Lithium request

I am also from Southern Jersey (o8oo5) and go to the ALS Clinic in Tinton Falls, N.J. My neuro would do anything for me since my wife works for him. His explanation to me was that I was a slow progressor and he didn't want to try something that may have a negative effect. However, if the initial reports prove to be accurate he will prescribe it. Sounded reasonable to me.

 

[sand]

I just joined today and saw your info on Lithium which I just read about this week in an Alternative medicine article. I went to my neurologist and he would not prescribe Lithium for me. I left the article with him, but I am going to go to my General Doctor and I would like to know what amount was prescribed for you.

 

[Al]

I am a slow progressor and felt that after 3 months the Lithium was speeding me up so quit it. A few others at my clinic felt the same and quit it. We were on 150mg twice a day.
AL.

 

[patricia1]

I THINK IF THIS WAS A GOOD DRUG WE WOULD HAVE HEARD BY NOW AND IT WOULD HAVE MADE THE NEWS. The truth is there nothing yet that has proven to improved symptoms of ALS.
I havent heard anyone getting better or slowing with Lithium and it can be a dangerous drug.

Pat 1

 

[ptich]

About couple of months ago I started vitamins E (400/day) and C (500mg/day), and clearly felt that my symptoms were getting worse, especially fasciculations. It seems that any medicine just makes this desease worse.