Hi,

For those of you who know me I will keep my history short as I have been doing the diagnosis dance since 2007! I have had ptosis right eye and occasionally left eye since 2007. I was diagnosed with MG, but the sfemgs and blood tests came back negative - although mestinon always resolved the ptosis, along with ice pack tests.

In 2009 the MG diagnosis was removed and I wasn't informed but my medical notes said I had somatoform disorder. In 2010 I worked out I had autonomic nervous system issues and Ehlers Danlos Syndrome. All the doctors I have met outside neurology have said I have MG. I am so sick and tired of it I never bring it up anymore. ANS problems can originate from an autoimmune disease and its really weird but my sister has also developed ptosis now and no one is giving her an explanation either.

However today I have found new vigour as whilst going through some old paperwork I found a letter thats states "Certainly as you point out, tests for MG were negative and although the icepack test was dramatically positive, unfortunately this is not entirely specific for this condition"

All my other paper work ignores the ice pack test - this idiot then wrote another letter to the neurologist suggesting I had CBT for my ptosis.

So my first question is do any of you know any other diseases where the icepack test would be positive? I have spent the morning on Google scholar and I am yet to find anything.

I have pulled off medical papers which suggest the ice pack test is 80-100% for ocular myasthenia, but it doesn't state what other diseases it would be positive for. Also states blood tests are negative for 46% patients with ocular MG and SFEMG is negative in around 50% of patients. I have always believed I have MG, it was just a case of proving it.

Are there any good medical articles you know of and could provide links to regarding the ice pack test and also any on ocular MG that state the negative blood tests and sfemgs in these patients.

I would like to be armed with irrefutable proof of ocular MG ( I actually think I have quite mild generalised MG but thats a story / battle for another day) before I broach this verboten subject with my doctors.

Thanks in advance

Rach