My daughter saw a neurologist on the 14th December almost a year after a positive blood test. He said she could go on mestinon so She has finally started taking mestinon 30mg twice daily and is getting some relief, she is less fatigued and finding it easier to concentrate and take in information at school and is less fatigued at school. She has been referred to a muscle dr having an mri scan on her thymus gland and he has referred her for an Emg which she had on Friday. The dr who did the Emg was very obnoxious! He asked what her symptoms were and was nasty about everything she said! Apparently myasthenia doesn't cause fatigue , doesn't make your muscles ache or tire them out it just makes them weak nothing else!!! She wasn't allowed to look at me and I was told off for talking !! Apparently she isn't a child and can talk for herself, she was nervous expecting needles to be stuck in her we didn't even tell him she was taking mestinon he Was so nasty and rude!! The test he did was just stuck some pads to 3 fingers and her elbow he did about 5 shocks in a row one after the other about 4 times said it didn't show anything up and that was it. It was basically the same test I had for carpal tunnel 11 years ago. Is this the correct test for myasthenia? We were under the impression they were going to put needles into her muscles in various places! Has anyone else had this done and did it show anything up?

I don't know what it is with these neuros. I have a neuro-muscular Dr who is the biggest jerk I know of. I see him about once a year. I only see him once a year but only because he is brilliant. At least I know what to expect
Mike.

Back in '05 when I had an undiagnosed myasthenia Gravis crisis I had an emg, ekg, muscle test with the needles up and down my arms and legs (that one hurt like no other) but the only test that gave the Dr. The MG diagnosis was a blood test specifically for MG or MS.

Yes my blood test was positive and my neurologist told me that a positive blood test was a positive diagnosis and prescribed me mestinon which has helped me especially my droopy eyes and swallowing the most. My daughter saw a different neurologist (unfortunately mine was off sick which is typical) he wants to check for other autoimmune diseases at least he has given her mestinon and it is giving her some improvement but the Emg that you have had sounds more like the one we were expecting her to have.

I had needles with electricity in my face and shoulders..
They called that room "the electric chair" 😛

I just had an emg yesterday. I was told to stop all mestinon at least 24 hours before the test, or it could affect the results. Were you told that for your daughter?


My emg involved a variety of arm and leg testing, with the pads in different places and the shocks also varying in place and strength. Then there was the needle testing, too. No neck and face this time, thankfully. Had that in the past. No fun.


My doc was puzzled that the emg didn't show anything, and my AChR is negative, but the mestinon is having a dramatic effect on me (it's only been a few weeks).

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?

Sounds very painful!!

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.

That must be really annoying for you you would expect it to of been done the same time as the achr test! Insurance companies just try to squirm out of everything don't they. The NHS is pretty bad but at least we don't have to bother about filling forms in to get insurance companies to agree to do testing etc must be very difficult. Hope you get sorted out