Hi Cait,

I have generalised muscle weakness and have had since 2007 - however that's a cross over symptom and has been attributed to EDS.

I've had all the blood tests, done at least twice between 2007-2009. I have also had 4 emg/Sfemgs done during that time as well. All have been negative.

However all the eye symptoms are much much worse than they have ever been. They have rapidly deteriorated over the space of 8 weeks yesterday I had breathing problems so had to resort to taking mestinon and I've been paying the price ever since. It resolves my symptoms I just don't tolerate it due to other medical problems.

I am seeing a neuro opthalmologist on the 16th, every neuro opthalmologist I've ever seen has told me without a doubt its MG. Its the neurologists that say it isn't because I fail the diagnostic tests. However those of you who are knowledgeable about MG will know that up to 20% of MG (generalised ) will be negative on all tests and around 50% of those with ocular MG will be negative on the tests.

I've seen the UK expert and I don't rate him, not because he didn't diagnose me but because he lied and made out I was mentally I'll when in fact I was suffering from a genetic condition that he knew nothing about, despite my blood pressure reading at his clinic of 80/50 and a pulse of 54! Apparently I can manipulate my pulse and blood pressure better than a yoga master!

I just thought I would pop in and say hi to those of the old guard that know me and give them an update and say hello to all the new people who I'm keen to get to know.

Thanks
Rach x