Thanks Annie for your kind words and thoughts. I am very tired today so hope I can answer OK. I feel very weak. Stress as you know is a killer.

To answer some questions...yes I am on cortisone. It is not Prednislone but hydrocortisone and equiv to about 5mg of Prednisolone. But it works differently ...ie faster peaks and faster lows... ups and downs all day.... My GP did this much for me as I was collapsing but as the Neuro did not see it - it did not happen

The last Endo I saw said the cortisone I take would affect the EMG. The Neuro said it would not. But he is not familiar with hydrocortisone and only uses Prednisolone.

The day I had the EMG - I was 'crashing' and took extra so in effect had equiv to a massive 10mg Prednislone just before the test. That is 10mg in the bloodstream within 15 minutes and peaking high ...not spread out over 24 hours... do you see what I mean ? I am sure it matters... and the Endo said it did.

Yes I have slight ptosis but it is hard to photograph. I have had lung function tests which show significient lung weakness which is not asthma. I have had sleep apnoea tests which show significicent REM sleep only apnoeas. I have read and researched and found this is a neuro muscular or pyche problem...

Guess what my Neuro does ? Ignores all this.

I have heard my respiratory dr say MG under his breath but he will not write it down. I have heard the Opticians and dentists all say it - but they will not diagnose it. I own 4 pairs of glasses to help me see. I have had myopia for decades and trust me - I know when my eye prescription needs changing or the optician has not done a good job. For 3 years now I have battled to get my vision and it is not working.

For some reasons - the Neuros here do not understand the rarer types of MG. They expect to see the classical MG. If it is not classical and textbook - it is not there. How unscientific is that ?

My only hope at this stage is genetic testing. I am about to see if my GP can refer me for that and to the same Dr as my second cousin. Failing that - there is no hope really until I get worse.

One thing that is annoying me is that now I am less active and fixed to a recliner ... I am gaining weight. Now of course the Drs are saying it is my excess weight causing all my symptoms and I have to get out and exercise more ...

Thanks ... very tired and sad today... I have read so many posts and people mentioning symptoms and I have so many that I just assumed were normal as I have had them all of my life... and I have learned to live with them. Like holding the phone and styling my hair, and holding the steering wheel... things that I had never thought about before...but everytime I read them it is like a 'me too' moment. But no neuro believes me....