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Old 04-20-2009, 06:07 PM #11
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the way you just described your weakness, does sounds a lot like mine did as well. I think you may need to see a different neuro, one that is very familiar with MG.
I'm thinking that you may need to see a Neuro Muscular specialist.
I'm so sorry you are going through this!
Hopefully soon you get in to see another neuro soon, and get some relief soon through some meds.
I'd be riding my bike, and pushing the peddles would slowly get harder and harder, to the point I'd have to concentrate all my energy to my legs, just to get back home. Other times, they just wouldn't move. I know this is a scary time for you. Stairs are the worst for me as well.
best of wishes
Love Lizzie
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Old 04-21-2009, 08:40 PM #12
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You definetly do need to see another neuro in my opinion.

I was dx'd MG, but as I think I said in an earlier post, I have a second set of symptoms that are not MG. The mestinon works for my MG weakness, but there is another weakness I get that the Mestinon does nothing for. I've learned how to distinguish the two a little better, so am able to give my neuro better information now too, but she found things in my neuro exam that indicate something else as well - possibly MS, but I am currently being tested for a host of other problems.

Because of this, I have been doing a lot of research into other neuro and some non-neuro conditions that have symptoms that overlap MG. I have found that there are many, many of them. Some are relatively easy fixes, some are really awful. The point being that you have some symptoms that do seem like MG but also some that don't go with MG like the lack of reflexes. You said they detected liver toxicity too?
That itself can cause MG like symptoms, weakness, fatigue .....

I wouldn't wait around to long to get in to get another neuro's opinion, and as Lizzie said, you'd be best off finding one that specializes in neuromuscular conditions.

MDA has clinics around the country - if nothing else maybe you could look them up at MDA.org and check out some of the information on the various neuromuscular diseases there (they deal with many - not just Muscular Dystrophy - including MG). You may be able to get some help finding a specialist through them.

Please don't mess around with this. It could be something simple, but it could also be something that needs early attention and treatment!

Best of luck to you. Big hugs and Kisses.

Becky
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