Hi. First, let me say I sure do sympathize with your uncertainty. I'm also seronegative, and one doctor thought my SFEMG was inconclusive. I'm being treated with Imuran based on the second doctor's opinion.
When you say you had all the tests including an EMG, I am assuming you mean you had a
single fiber EMG. I'm also assuming that you were tested not only for the AChR antibodies, but also for MuSK and LEMS.
I don't have any answers (obviously), but I have a few comments you might consider. First of all, it is typical for MG to start as ptosis and then become systemic.
Second, it's true that too much Mestinon will make you weaker. But too much Mestinon will also give you side effects. When I take too much, I get little muscle twitches in different places on my body. From what I've read here, that's typical.
Could you talk to your doctor about stopping the Mestinon for a bit to see what happens? The reason I say "talk to your doctor" is that it could be dangerous. If you do have MG and it's severe, but the Mestinon is helping, you could have a crisis. Another caution is that MG can be so very variable that you could stop taking the Mestinon and feel much better or much worse, but it could be just a coincidence.
One more thing: when people are at the ptosis-only stage, it's very common for them to test negative for the antibodies. Often they test positive later on, when the disease becomes generalized. Get tested again!
I hope others here have comments to add.
Abby
Quote:
Originally Posted by southblues
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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