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Old 03-24-2014, 06:50 PM
sandy56 sandy56 is offline
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Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
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Hi, I also have "mild" symptoms. About 18 months ago I started having blurred and occasional double vision. I thought I needed new glasses so went to an optometrist who put prisoms in my lenses. That really did not help but I did not have time to pursued it further due to a medical crisis with my father. The stress of the situation brought on ptosis, arm and leg weakness and slurred speech. I was dropping things and tripping a lot. It felt like my tongue and lips weren't working together. I also was having new onset migraine headaches and numbness and tingling in my hands and feet. Testing showed I had a B12 deficiency, my Achr antibodies were negative. I was sent to an opthalmologist for my vision issues. He tested my upward gaze and was convinced I had MG. He recommended a Tensilon test to confirm since I was antibody negative. My Neuro did not do the test in his office and planned to send me to the Mayo Clinic. In the weeks it took to prepare the referral I was getting worse. My chest was heavy and I felt like my throat was closing up ( worse at night). My Neuro told me to go to the ER. I did some research and found a Neuromuscular MG specialist an few hours away. I went to the hospital ER associated with his practice. Luckily, one of the 2 MG specialist was on call that day. He did the Tensilon test which was positive. I was admitted and had a Repetative nerve stimulation test and chest CT that were negative. I also had a negative EMG(well they found mild carpal tunnel). I was told I did not need a SFEMG as it is expensive and would not change my diagnosis of MG. I was on prednisone for 8 months and now on Cellcept 1000 mg a day. I take Mestinon 60 - 90 mg 4 times a day.
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