Thank you Kathie and Maureen for your replies, support and advice....I just feel a little defeated with the constant rounds of Doctors, Tests and months between waiting without really getting anywhere. I feel like I am jumping through hoops and I am starting to wonder what for...and if it is worth the stress and energy that in turn just makes me worse!

Annie, thank you for your advice, I hope you're right and he is just being hesitant in his letter. My Dad always comes to the appointments with me as it is a 2hr drive and he always says it all goes over his head but he was surprised by the letter too as he said whenever we have seen my neuro he has been adamant that my symptoms have to be MG....he also says the tests are not always positive, there are cases where the patient has to accept that the diagnosis is clinical and that the treatment poses risks. He did mention something about there being things he can say, and things he cannot say but that he felt we were able to have a full and frank conversation (I saw him privately on that appointment but I am back on the NHS now with him so maybe that changes things a little?!)....but his letter has thrown me and left me feeling very uneasy about everything! I actually specifically asked if a negative SFEMG would change my diagnosis and efectively how he would treat me and he said no, but I had some breathing issues a couple of weeks later and had to call him he seemed a little off and said how he needed the SFEMG done before steroids because of all the risks etc (In his defense, he was meant to be on holiday and was in catching up on paperwork, including the letter from my appointment, and I had spoken to his Registrar after being told to do so by my GP and she was wanting to admit me for steroids! So maybe that got his back up or he was having a bad day....I just hope it hasn't affected my situation!)

Sorry, I went off course a little there!! As far as I am aware I haven't had any of the tests you listed there, just the AChR and MuSK tests. I am in the UK and they don't seem to refer to Pulmonologist, I read of lots of you seeing them as part of your system in America. I did do a Spirometry test and struggled to blow a consistent breath, I needed a break to get the 3 breaths in the required range and then after the ventolin, I blew worse!! My GP didn't know what it meant but said she wasn't worried as I was within the range for my age on the first breaths....I wondered if it showed fatiguability of the muscles and so did the nurse who did the test?

I definitely improve with rest and my mestinon works better when I am rested, if I try to do too much my mestinon won't work at all at times!! Since this last flare up my voice seems to have become affected, everyone keeps asking if I have a cold as I sound croaky BUT the strange thing is that if I don't talk for 15-20mins my voice comes back as clear as ever but when I start to talk I get croakier and croakier and talking becomes more and more of an effort until I rest my voice again?!

Thanks again
Eve.x