Friday, February 8, 2008

RESPONSE TO J.M.C

J.M.C. LEFT A RESPONSE AND A QUESTION TO MY POST ON THE LITHIUM STUDAY:

J.M.C. has left a new comment on your post "SOME INFO ON THAT STUDY (ITALIAN STUDY ON LITHIUM)...":
"We can only hope this does not end the way Myotrophin did. Mixing with Rilutek is interesting but not all PALS agree with that drug nor do they take it. What will be their option"?

TO ANSWER YOUR QUESTION-WHAT OTHER CHOICE DO WE HAVE?? Riluzole BRAND NAME RILUTEK? I WAS TOLD BY MY DOCTOR THAT FIRST, IT REALLY ONLY PROLONGS LIFE FOR 3 MONTHS. IF I'M AT THAT POINT IN MY DISEASE-I WOULD JUST RATHER DIE WITH DIGNITY. I DON'T WANT ANY HEROIC MEASURES TAKEN WHEN I'M AT THAT POINT-THAT IS NO WAY TO LIVE--I HAVE ALREADY SIGNED THE DNR-(DO NOT RECESITATE).
AND SECONDLY, MY DOCTOR ADVISED ME AGAINST TAKING RILUTEK W/ LITHIUM-THE SIDE EFFECTS FAR OUT WEIGH THE POSITIVES. AND I PLAN ON KICKING THIS DISEASE'S ASS ANYWAY I CAN. WE DON'T KNOW ENOUGH ABOUT LITHIUM AND ALS YET AND I'M NOT GOING TO WAIT AROUND FOR THE RESULTS OF A UNITED STATES CLINICAL TRIAL-WE DON'T HAVE THE LUXURY OF TIME-THIS IS SOMETHING POSITIVE IN AN ALS WORLD DOMINATED BY NEGATIVITY.
J.M.C., IT SCARES THE SHIT OUT OF ME TO THINK ABOUT WHAT THE LATTER PART OF THIS DISEASE IS CAPABLE OF.
SO AGAIN, I ASK YOU- WHAT OTHER OPTION DO WE HAVE??????

FINALLY SOME GOOD NEWS-EMBRACE IT.
EMAIL ME AT schemera@yahoo.com
DREW

3 comments:

five percent said...

I'm in complete agreement. Asked my neurologist about it today and was told not FDA approved...but I know of others that are taking it. I'll keep looking until I find a dr that will give it to me.

LG said...

I really hope this drug works out for you. Like you said, you have nothing to lose. Lithium has been around for a while to treat manic depression (aka bipolar disorder) actually so it's for the most part a safe drug. I believe the full name is Lithium Carbonate.

Thalia said...

As someone who works in the mental health field and works w/ many on lithium, I can tell you that LG is right, it has been around a long time and is quite safe. The most important thing is to make sure to have routine labs to assess the lithium levels. I wish i knew what the contraindications are w/ other drugs though. But in any case, Drew, you're right. What do you have to lose. Keep fighting!!
-thalia