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Originally Posted by AnnieB3
Okay, good. I would suggest that you get a referral to Mayo Clinic in AZ. Why? It is possible she has a CMS. Yeah, it could be MG but without a positive antibody test, you need to make sure. You don't want to even consider the immunosuppressant path until you know whether this is a genetic issue or an autoimmune one. Not that they would do immunos for a child! But if she gets worse, they may have to try something. Mayo would probably redo the antibody tests, including MuSK, and they can do the genetic CMS blood tests.
What ancestry are you? There are certain genetic populations - like Northern Europeans - that get CMS more often.
Annie
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When we went to the dr the last time he said this wasn't genetic. I know he did blood work to check for mg not sure what it is called. I get all the dr notes after we leave so I can put it in her file. The last note he wrote was he was pretty sure it was mg. I'm going to my aunts tomorrow who knows some info about mg she doesn't know a lot but knows how to understand what the dr is saying in all his notes. She is a nurse and has been doing research on dr's. We just want to make sure she doesn't get diagnosed with something and then find out that's not the problem. I wish it was cut and dry like a lot of other health issues but it just seems there hasn't been lots of research done about mg. this site has been so informative. You can't find anywhere else on the web with info about mg like you can here.