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Old 06-15-2009, 09:41 PM
ras1256 ras1256 is offline
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Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
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Hi Guys! Sorry you're all spazing out! LOL - I know that's not funny, but I've been there too! Some things to keep in mind.

1- Botox is a NO-NO with MG, so I'm glad you refused that needle Pat.
2 - Simon, if your's get worse after IVIG, I would certainly suspect a Mestinon overdose during that time. Same with you, Xmas, and you too Nick.

Xmas, if it got worse on a upward tapering of Mestinon, I would say you had hit your level just before the cramps, etc. got worse.

Nick, cigarettes and coffee (I partake of both too!) both have the same effect as Mestinon, believe it or not. I found that through posts by Mrs d and Annie on this forum. I had been self medicating myself for years. If your twitching gets better when you back off the coffee and cigs, it's probably relieving an overdose of acetylcholine.

All of you that notice it getting worse on the Mestinon, particularly if you notice increased perspiring, may want to check with your neuro about adjusting your dosages. Too much acetylcholine causes a cholinaterase crisis, which is the same symptom-wise as not enough. Obviously, though the treatment is the opposite.

It's very tricky when you have been given a set dosing schedule, because there are foods (nightshade family - nicotine is the strongest of this group but it includes peppers and others I can't think of right now) that can affect your levels, and Myasthenia fluctuates, and even fluctuates within those fluctuations. You may have a very bad month with some weeks or days within that month being worse than others. It can even fluctuate from hour to hour.

My docs have allowed me to adjust my doses myself according to how I feel. Sometimes I take 30 mgs, then 5 hours later need 60, etc. Some days I can go with none. As you get more familiar with your MG, you will get to where you can do this as well, I'm sure, but for newbies you should definately discuss any of those adjustments with your doc.

I have noticed twitches and cramps when not on the Mestinon at all however. I always attributed it to my overlap and/or BAD neck, but..........HMMM

Hope you all can settle those muscles down a bit! It's the pits being spazzy, I know!
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