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Originally Posted by Poetist
Now, I know MG is rarely diagnosed in childhood, but I wonder if I had it all along. I'm still waiting on a definitive answer on whether or not I have it.
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Poetist, what you say sets off a red flag in my head. Myasthenia gravis is caused by your antibodies attacking your muscle receptor cells so they can't bind to the chemical your nerves release to communicate with them. If they did a blood test, they're looking for those antibodies.
But there are other reasons your nerves and muscles might not be able to communicate. Some people are born with not enough muscle receptor cells. Some people don't produce enough of that chemical. These are inborn problems (congenital), but they sometimes don't start really affecting you until adulthood. They give you the same symptoms as myasthenia gravis, but there's no antibodies.
If you had symptoms as a child, you might have had myasthenia gravis back then. Or you might have one of these congenital myasthenic syndromes. If you have a congenital myasthenic syndrome, it won't show up on the blood test--and the drugs used to treat myasthenia gravis (the ones that suppress your immune systme like Prednisone, Imuran, and Cellcept) won't help you (but Mestinon will).
I asked my neuro yesterday how congenital myasthenia syndromes are diagnosed. He said it was difficult. He said there were people at Mayo, I think, who know how to do special muscle biopsies or something.
Anyway, tell your doctor about what you remembered. It might be part of the puzzle!
Abby