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Anyone been treated at Mayo Clinic for Ocular Myasthenia Gravis?
Autoimmune Diseases | Last Active: Sep 14 6:47am | Replies (35)Comment receiving replies
I have OMG diagnosed June 2021 prescribed MESTINON 60MG HALF TAB 3 X DAY FOR 1 WEEK. Graduate 1 Tab 3x day. I went off medication could not handle Diarrhea. Will have appt. with Neurology soon & see what they say. My condition has not changed. It is not real bad. I just have what I call a lazy right eye. I think I was born with OMG. The eye doctor FROZE MY EYES FOR 1 MINUTE. IT WAS A VERY PAINFULL TEST. Then I had blood tests to confirm OMG. When I took my medication I noticed the eyelid lifted almost immediately. It works very fast within 30 min. The doctor confirmed that is what it does. I have been advised to wear a medical bracelet incase I have a breathing problem & cannot communicate with medical staff. That way they know to go right to the source of OMG & bypass other tests that would delay the treatment I need. Won't take Prednisone because of side effects. Boomerang12
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I never had the diarrhea or stomach issues. They prescribed a Prilosec type drug that I could take if that was an issue.
Yeah, I have a tag I carry on my purse probably safer to have a bracelet, but I don't do that. I know there are certain anesthetics and and antibiotics we cannot handle if we have Myasthenia gravis.
Thanks for your story
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Thanks for the info Boomarang. We sound very similar. I had the same problem with pyridostigmine, the generic for mestinon, so I stopped. Interesting to know how fast it worked for you. The surgery helped lift my lid so my vision is “less” affected. It still droops. I may try mestinon again now that I know more of how this disease acts on my body. For eyelid lift you might want to try Uneeq eye drops just to see if they help lift the lid. They did seem to help me sometimes, but if out in the sun my Ptosis eye labors greatly so I have begun a habit of just allowing it to close and just use one eye. If I truly need what I call stereo vision, I’ll lift it with my hand. I have heard about eye glass frames that have a built in crutch but have not found a supplier.
Never had the freeze test, but if all our tests are just a confirmation of OMG I have a good test… look down for 10 minutes…reading a book… then look into the mirror… my eyes look and feel normal… but wait for it ….keep looking into mirror, and I can watch my lid fall…Myasthenia Gravis, Ocular style confirmed. I’m still going to Mayo and will post that experience. Thanks again.