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Old 07-16-2012, 08:38 PM #1
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southblues southblues is offline
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Join Date: Jul 2012
Location: Georgia USA
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southblues southblues is offline
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Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default I wonder if I am misdiagnosed.

I started having ptosis problems over a year ago. I had an MRI, an EMG, blood tests, an EEG, a psychological examination, and everything the neurologist could throw at it. All the tests were normal with the possible exception of that I might be a bit crazy.

He sent me to an eyelid surgeon. The eyelid surgeon said that I had seronegative MG and would not do surgery. I ended up at a second neurologist. He put me on Mestinon. I seemed to have some improvement. The second neurologist insists that I have MG.

Then I started having systemic symptoms. I fell several times. My voice goes out sometimes. My tongue gets thick feeling and I can't talk that well. I still have some ptosis. I have intermittent vision problems. The opthamologist documented that my vision with glasses had gone from 20/20 in my right eye to considerably worse in just a few weeks.

My dosage has gone from 60 mg twice a day, to three times, to four times a day.

So my question is this. Could I NOT have MG, only have a surgical eyelid problem, and all the systemic problems are being caused by the Mestinon? I don't want to spend the rest of my life messed up due to a doctor mistake. Well several doctors. The vote is this.

1 neurologist and 1 internal medicine specialist say I don't have MG.

1 neurologist, 1 internal medicine specialist, and 2 opthamologists say I do have MG.

What should I do?
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