Quote:
Originally Posted by restorativepose
Good morning friends,
Thanks for the thoughtful replies. It's good to know when you're amongst friends.
Yes the bloodwork test for MG... I left that out of my initial post. It came back negative, so if MG is to blame I would be one of the 20% "seronegative" (right word?) people with it.
A CT scan hasn't been done to look at the thymus. I called the neuro's nurse this morning to ask about the chest pain possibly being related to the thymus. She was going to forward my question to the doc.
But on the same call, she said that just last night the doc had put in an order for me to have an MRI... Something he'd declined (for me) initially. My eye dr was the one who became concerned based on what she was observing, and cared enough to send the neuro a letter stating her suggestion of an MRI.
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Many of us - especially if the initial diagnosis is made because of "ocular" suspicions - will test negative for MG.
The MRI is done to rule out a brain tumor, the CT scan is done to look for a possible thymoma. An MG diagnosis in the absence of positive bloodwork is a diagnosis of "elimination" - a doctor will rule out other things first.
If those tests come back negative, the muscle tests are performed. You indicated that your muscle tests came back suggesting there might be a problem, so that's another data point for your doctor.
If your MRI and CT results come back negative, the next thing that you can ask your doctor to do is a Mestinon trial. If you don't have MG, you will NOT be able to tolerate even a small dosage of Mestinon. If you are able to tolerate it, chances are that MG is what you are looking at.
You don't want to be on Mestinon when these other tests are being run, as it can skew the results of those tests.
While you are waiting for the results to come back, PLEASE treat yourself as if you DO have a positive diagnosis - by that, I mean take it easy. Don't over-exert yourself, and don't try to "exercise" yourself into feeling better (if you have MG, that's DEFINITELY not gonna work).
Allow yourself to rest and relax - it really is the best thing for your body. Let your family and friends know your limitations, and don't be afraid to ask for help if you need it.
Like I said, we are here to help you navigate your way through this - ask away (or complain!). And always remember - there are no "stupid" questions....
