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Originally Posted by SixMile
Thanks for this write up and all the ones above. I probably had MG for years thinking I was just getting old. I was not as stable as I should be and my breathing was getting to be more of a problem each year. The doctors kept giving me EKGs and chest X-rays and they always came out good.
One morning I woke up with double vision and finally could not hold one eye open. Then the problem switched to the other eye. Went to the Eye Foundation in Birmingham, AL, they tested and concluded MG and gave me Mestinon (Pyridostigmine) 40mg three times a day and it barely worked; then he added Prednisone (5mg). (Pyridostigmine) and it worked very well.
The reason I am writing, I seem to have lower track stomach problems which causes my intestines to make a LOT of noise. Then my legs cramp a lot. My breathing is still slowly getting worse and I get tired and sleepy. DO YOU HAVE THESE SAME PROBLEMS? IF SO, WHAT DID YOU DO AS FAR AS INCREASING OR DECREASING MEDICINES ? I take my medicine with meals.
I am now with a local Neuro who handles MG. My doctor says SLOW and steady and that all cases are different.
SixMile
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Sixmile -
What you're describing almost sounds like too much Mestinon (stomach and muscle cramping) and too much can cause the same symptoms (breathing?) as not enough. This is called cholinegeric crisis and has to be treated differently than myasthenic crisis although they look identical to doctors. It's best not to get to that point in the first place (DUH). Do you notice increased sweating, too?
Have you seen your new neuro yet? I think it would be a good idea to call either them or your other doc, let them know what you have noticed while on both meds and see if they think you should cut down the Mestinon.