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opczynski1944

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Joined
Jun 14, 2008
Messages
1
Reason
PALS
Diagnosis
02/2008
Country
US
State
New Jersey
City
Palmyra
****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

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
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

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
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

Senior member
Joined
Feb 19, 2008
Messages
531
Reason
PALS
Diagnosis
08/2008
Country
US
State
California
City
Anaheim
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

Active member
Joined
May 23, 2006
Messages
70
Reason
PALS
Country
CA
State
Alberta
City
Calgary
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

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
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

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
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

New member
Joined
Jul 13, 2008
Messages
1
Diagnosis
6/2000
Country
US
State
florida
City
clearwater
lithium

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

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
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

Active member
Joined
Jul 12, 2008
Messages
97
Diagnosis
05/2007
Country
US
State
CA
City
San Diego
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

Member
Joined
Oct 2, 2006
Messages
12
Reason
PALS
Country
US
State
New Jersey
City
Barnegat
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

Member
Joined
Jul 14, 2008
Messages
26
Reason
DX UMND/PLS
Diagnosis
05/2008
Country
US
State
GA
City
Lawrenceville
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

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
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

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
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

Distinguished member
Joined
Jan 12, 2007
Messages
171
Country
US
State
California
City
Mountain View
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.
 
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