Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
ButtonCollector
Well, my new neurologist has decided to start me on a trial of Mestinon to see if it helps with my eyelid droopiness and muscle problems. My blood work for MG has been negative, but he said sometimes it is negative especially with occular myasthenia.
I did see my regular ophthalmologist on Friday and showed him pics of my recent eyelid droopiness. He took one look and said it was neurologic and looked like what he saw in Myasthenia. I asked him to send a report of visit over to my neurologist. I got message back from neurologist yesterday evening that he would be more than happy yo start me on a trial of the Mestinon if I was willing. Hopefully he will get it called in today for me.
Any advice from those who take Mestinon? How long did it take you to notice improvement?
I did see my regular ophthalmologist on Friday and showed him pics of my recent eyelid droopiness. He took one look and said it was neurologic and looked like what he saw in Myasthenia. I asked him to send a report of visit over to my neurologist. I got message back from neurologist yesterday evening that he would be more than happy yo start me on a trial of the Mestinon if I was willing. Hopefully he will get it called in today for me.
Any advice from those who take Mestinon? How long did it take you to notice improvement?
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Always interesting to look back on how much I've improved with just one medication. I happen to have Sjogren's (dry, dry, dry) so the side effects of Mestinon are actually helpful for me.
Flutebell
It has pretty drastic digestive side effects for some folks. My doc suggested over-the-counter loperimide (Imodium for instance) and eating something with it. It takes a while to adjust to the side effects which include muscle cramps, twitches as well as the digestive stuff It took me a couple of weeks to get used to it--but it worked well to help me breathe and be active while waiting for prednisone to kick in.
There is nothing like the thrill of waking in the middle of the night with severe cramps in one leg or both--genuine agony. I learned to do a lot of stretching them out before going to bed so they didn't cramp so much. Even my feet cramped. I stood back from a wall, feet flat on the floor, and did push-ups against the wall to stretch the calves for several minutes. It helped.
But, it did work good for MG!
Good Luck
Wellness,
For those who take it three times daily, do you try to spread them equally like that? I am wondering since one dose would be at bedtime. Is there a benefit at that time of day? Or is it more about trying to keep a steady amount in the body?
Good luck