Dave White
Forum Replies Created
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This will be my Second Time going this route because of course the 2 companies can’t get long and leave us 2 choices of medicine… (legal money grab stuff we all know)
For ME
Firdapse is only 30% effective, I can not walk as far, I have to go back to using my wheel chair more, I can not stand as long and need more help the I did on Ruzurgi.Why because the 2 chemicals are totally different blends..
for MY body the 3,4-Diaminopyridine (Ruzurgi) just works 70% better
the Firdapse amifampridine does me barely any good, BUT? we have no choice now and bottom line is we have to just DEAL with it..
That is my personal experience
I am also on a very good Keto diet with no sugar or garbage in y body I am sure that helps out some -
This is exactly the problem; LEMS has no medical bracelet with this information tied to it.
Say for example if you got into a car accident and needed surgery, if they do not know about LEMS and knock you out with the wrong chemical, you do not wake up.
I had a close call as well
2016 went to ER with a Appendicitis
They did the scans and blood work and came back that it needed to come out ASAP… I said I have LEMS ya we know it is on your chart..
I said I cannot just be knocked out with the normal drugs, O it has nothing here on that.. I asked them to look it up. Instead they send the guys who were going to do the surgery down I told them I need to talk to the anesthesiologist not them and they did not understand..
After about 45 minutes the anesthesiologist came down . I asked have you worked with LEMS or MG she said no and had no experience
So I had to be out on high power antibiotics for the evening until a anesthesiologist could come in the next morning and give me the proper chemical to do the job.
So he careful have a list of everything on your phone and keep it handy.. -
I hope my list helps then maybe a mod can add it to their files or pin the topic?
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Yes I am on Mestinon as well just as I have been since 2013