Quote:
Originally Posted by AnnieB3
Don't doubt your diagnosis!  |
Yeah, especially after working so hard to get it, right? But I'm convinced enough that I decided to start the Imuran today. I would have felt better about this if I'd seen a dramatic change with the IVIG--but before I started I was at my weakest ever, and now I'm about as good as I ever get...so that's something.
Quote:
Originally Posted by AnnieB3
It might be that MGers tend not to talk about those things. Think about any appointment you've ever been to with a neuro. Appointments are short, they don't necessarily remember all of the details and neurologists often go straight to "What treatment do I give now."
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Right, that's exactly it. I talk about my worst symptoms, and sometimes don't even get around to mentioning the mild ones. He, on the other hand, spent most of his time examining my eyes, even though I didn't complain about them!
Quote:
Originally Posted by AnnieB3
What position do you sleep in? Do you tense up while you sleep? Have you had a spine MRI to look for nerve problems? Have you had your B12 rechecked? There are so many other things that could contribute to those muscles of yours being weaker, including the fact that you simply have that "type" of MG. |
I wake up feeling almost non-MG strong (except during a really bad stretch). I get weak (I _just_ figured this out!) after sitting up straight for too long. That makes total sense, because I'm wearing out those side muscles--I use them to hold my body upright when I'm sitting up. The day I ended up at the ER, I had been at the movies with my family. Usually at the movies I slump way back and put my feet up, but this time there was someone in front of me, so I sat up straight. I had a really hard time getting to the car, even with my strong husband's support--he had to carry/drag me. Then I was confused: why am I so weak when I've been resting? Now it makes total sense. Also, my Sunday morning weakness (church) and my weakness after my ASL class, and after the philosophy class I teach sitting down. I had been putting it down to mental energy expenditure.
Anyway, I feel more confident in my diagnosis when I think of this, because now it's clearer to me that this is what is meant by fatiguable weakness, which is the hallmark of MG.
Thanks so much for talking this out with me. It helps immensely.
Abby