Hi Rachary,
It's important to know that the MuSK antibody was discovered relatively recently in connection to MG. Prior to it's discovery, many more people had negative tests for the antibody. The way I see it, I'm only negative for the antibodies they have discovered so far! I wouldn't put too much weight on the blood test. MG is generally dx'd (diagnosed) from a group of tests because no one test can confirm MG and not any other condition.
Having a thymoma would be a biggie, though. And those can be either benign or cancerous, so I wouldn't mess around with that.
Heat sensitivity is a big problem (bigger to some than others, poor Erin) with MG. You should research everything you can on the internet via Mayo clinic, NINDS, NIH, MG foundation, etc. to learn as much as possible about your possible condition.
This forum is a great source for comparing notes as well, and you will find the people very helpful and supportive. I was dx MG in 2004, but just found my way here and am so grateful to everyone!
It may be good to start your own thread if you have questions - you'll get more information that way.
Good luck and keep us up to date.
Quote:
Originally Posted by Rachary
Hi, I'm new here and it looks like I might have MG. CT scan shows a possible thymoma and I get very tired and weak. Funny thing is that I was fine for 6 months last year and then there was a heat wave and I was awful again and have ben sick for months since. Thing is, I have tested negative to the main antibody although the neuro I am seeing is re-testing for it and is testing for the MUSK one as well. So, if that's the case, i wonder why the heat makes me worse? Anyway, they want to take my thymus gland out and I'm scared that will only maing all of this worse. I have had these symptoms - dry cough, tickly throat, light sensitive and tired eyes, intense fatige - for a year and half now and have been managing without medication although it's very inconvenient!
Any comments/thoughts gratefully accepted
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