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Old 11-17-2016, 09:09 PM #11
Jane1 Jane1 is offline
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Jane1 Jane1 is offline
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Join Date: Aug 2016
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Thank you so much for your concern and support. My family is like "ok, great news. It's not MG. Everything is good." I'm certain they think "she is just getting old and needs to slow down. Her computer screen is too small and is stressing her eyes. She should wear her contacts. She has always done too much." Blah. Blah. Blah!

I don't believe they tested for CMS or LEMS. I'll check on that when we return home after Christmas. Yes yes, the return trip home after grocery shopping is taxing. My eyelid begins to droop, I constantly want to shut my eyes, and everything is blurry. LOL I have discovered the wonders of shooting that ac on my eyes, as well as the horrors of turning that heat on to blow in my eyes.

Before Mestinon, it took me two months to wash and wax the motorhome. I could work about ten minutes, rest ten and then work another ten. I was good with this routine for about an hour and a half and I was done for two days. At times I would get so weak and dizzy that I would shake. Before Mestinon I almost always had difficulty swallowing bread, crackers, cake and meat. Felt like someone was poking their finger hard at the middle of my neck. Now I try to time the Mestinon so it is easier to eat. Before Mestinon I would have an extremely painful neck spasm often. Orthopedic couldn't find a problem. Now the neck pain is less often. Currently if I am really tired I walk like a drunk. It's crazy. Yesterday for the first time I leaned over to pick up something and just kept falling forward. I hope it was just because I was tired. My eyes are the main symptom now that is driving me bonkers. I go to computer games, reading, watching tv, adult coloring for relaxation and my eyes don't cooperate for long with any of those activities. Listening to the radio is boring.

I have my blood work done at an Air Force base and I have asked them to send the labs to Mayo. They look at me like I have four heads and reply that can't be done. Thanks again for your knowledge. I'll keep plugging along. I don't care if I have the purple people eater disease. Just make it better.
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Old 11-19-2016, 04:22 PM #12
TXIzzy TXIzzy is offline
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TXIzzy TXIzzy is offline
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Quote:
Originally Posted by Jane1 View Post
Man oh man. I have issues. The biggest being my eyes are still seeing double and blurry, so I can't see how to start a new thread. I had more blood labs testing for myasthenia and Musk. All tests came back negative. I am taking 60 mg mestinon 3 times a day. The swallowing difficulties are much better and my eyes are better until after lunch. Then I begin to see double and things appear blurry. I have asked the neurologist to refer me to a neuro ophthalmologist. I feel tempted to quit taking the mestinon and go about my merry way, but not being able to see well in the afternoon and evenings is driving me crazy. I also can't drive at night or for much longer than 45 minutes. Rant over and so discouraged
Hi Jane, Please get in touch with a doctor who will treat your MG correctly. Many people with MG do not have the positive blood test and still present with the disease. My hubby had severe double vision, met with the neuro ophthamologist and was put on a regiment of Cell-cept. Mestonon will NOT help double vision...it only works fro the droopy eyelid. He was on both for awhile, and now is doing fine with just the cell-cept.
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FREDH (11-19-2016), Jane1 (11-20-2016), pingpongman (11-19-2016)
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