botox

[momofsixkids60]

Wow, I don't know how I missed this thread! I was offered Botox for the spasm in my neck and shoulder. At the time, I was still diagnosed with Paramyotonia Congenita. I only did it the 1 time for my daughter's wedding and it was very costly...$500.00 a vial. And once they "crack" that vial it is yours. It was very painful and I would never do it again! And it wasn't but 2-3 months later I got the ALS diagnosis. Not saying that had anything to do with it, but it makes me wonder.

Kimberly

 

[kevinw]

Ritulek has poor efficacy for ALS, but it is all that is on offer. I do not believe that there are any clinical trial data that shows the drug is of any use for PLS, but I would be more than happy to change my opinion if you can find the supportive research.
A doctor thinking it " may" be of use, is very different from evidence as to why they think it " may" be of use.
You only need to go to a neuro conference and stand around the fancy drug company stands to know why some doctors prescribe certain medication. To prescribe off liscense, asks a whole new bunch of questions.

First, I am not one to be argumentative (never have & never will). With that being said, per the Rilutek (Riluzole) website "Although the mechanism for RILUTEK is unknown, RILUTEK may protect nerve cells from exposure to too much glutamate by preventing glutamate from spreading in the body". So if is going to protect "any nerve cells" and in return "any motor neuron cells (Upper or Lower)", I don't see it as a waste.
I have been to conference's, seminar's, MDA Black & Blue Balls so I don't need to be educated in the vendors and info available. But to say that something is "being prescribed off liscense" is way offline and unacceptable (I am not sure where that even came from when we deal with professional doctors).

That is the last I will say on this subject, due to it is not beneficial to anyone trying to get better. I am sorry if I upset anyone , I just overreacted to the word "waste". I don't think anyone on here searching for help or treatment is wasting anything.