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Old 04-13-2010, 12:07 AM #8
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Well, I guess Monday is "Wacky Doctor" day.

I'm glad your doc ran a chem panel plus the Acetylcholine antibodies. Why is the doctor ordering an MRI right away? Why not wait? If the Acetylcholine antibodies come back positive, you're going to need a chest CT to look at your thymus. More radiation. Is the new doctoring all about doing the most expensive tests first? Why not an EMG first? A Single Fiber EMG? And why not the MuSK antibodies?

It sounds like your neuro read that tiny little page on MG in the medical school textbooks that says we are fine in the morning and get worse throughout the day. Well, if I run errands in the morning without enough sleep, I'm toast by noon. Then I'll nap, regain strength - maybe - and then do nothing for two days. MG is unpredictable and you can't say things that generalize about it like "MGers feel strong in the morning." Not if they're not on drugs, they're don't. And there are other things that come into play like if you are a restless sleeper and use muscles at night. Or if you don't get enough sleep at night.

MG is all about getting worse upon exertion or repetitive activity. What if you start out bad? Then you'll get even worse. And if you aren't on any drugs for MG, you'll be having symptoms all the time, 24/7.

I really don't understand neurologists. Here you are, having had symptoms for a long time now, and she just wants to lump you into a category (fibro) which she obviously thinks is a dumping ground diagnosis. Like Sue said, you can say "no" to anything in medicine. Tests or drugs. Or doctors.

I think your neuro is out of her league. But what do I know, I haven't met her. Maybe she's brilliant. Give her some time. Some doctors just don't "get" MG and have to be helped along. Maybe you don't have MG but it would be nice if you'd at least get the standard tests done for it to figure that out!!

I dunno, Jaimee, I've been through too much with neurologists to be very supportive of them in general. There are gems out there but we often don't have the energy to go mining for them.

I hope you get answers soon.

Annie
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