Quote:
Originally Posted by vickypanda
No she wasn't told to stop taking it, he didn't even know that she had had a positive blood test. Lack of communication in the NHS is amazing! Yours sounds like more of a proper test. I've read that Emg testing doesn't always show it up and doesn't give a definitive result. I presume that if mestinon is working for you they should keep you on it. I think if you have it and your blood test is negative I think they call it seronagative myasthenia gravis. Have they tested you for the musk antibodies?
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You should have stopped the mestinon at least 24 hours before the emg.
Finally found a neurologist willing to order the Musk test, everyone else (for the last 5 years) has said if the AChR is negative, then they DON'T order the Musk. So, now the new doctor has ordered it, but only one lab in the country runs it, and they are "out of network" for almost all insurance, including mine, and the cpt code they gave me is, according to my insurance, "experimental" not diagnostic, so.....
First we have to get my insurance to recognize the musk test as diagnostic. Then we have to get them to agree to cover it.
Then we have to get them to acknowledge that there is only the one lab that runs it.
Then we have to get them to agree to cover it as "in for out", which means at in-network rate even tho it's out of network (is a difference of about $800 to me: in-network costs me $0, out of network $300 deductible plus then 30%)
Then the lab gets the paperwork from the doctor
Then they mail me the kit to take to the blood draw technician
Then I go get the blood drawn with their kit
Then the technician sends it in
THEN I will get the results.
So, I expect that this will all happen maybe by the end of 2018 or 2019.
IF I get lucky.