Thanks Annie for all your hard work.

Some of those papers I have already discovered but others I hadn't. What I felt as I was reading the papers about the ice pack test was that some doctors embrace it whole heartedly stating 80-100% accuracy rate yet other doctors seem to disregard it. I know in the developing world the test is used to diagnose MG as its cheaper than a blood test.

I dont understand the doctors when they try and say rest is what improves the ptosis not the ice itself. Any rest test I have seen has said the patient should rest for 30 mins in a dark room. The ice pack test is a maximum application of 5 mins - wheres the prolonged rest period?

I sometimes use heat on my forehead to relieve the pain of the muscle spasm that happens when I have prolonged ptosis - its agony and feel like my forehead is being torn apart. Heat never resolves my ptosis, only cooling.

I have discussed the ice pack test with Angela Vincent in Oxford through emails. She said that the ice pack test showed there was an issue at the neuromuscular junction - but wouldn't say it was MG. Purely as it was the hospital and people she worked with that had dismissed it. So that was a fun discussion.

Placebo effect? when I first did an ice pack test on myself I didnt know why my mum was asking me to do it. It worked but I had no idea what that meant.

I have also had one positive tensilon test and one negative tensilon test. Just to make things even more confusing.

Mestinon is used in POTS to raise standing blood pressure. Another red herring thrown into my diagnostic dance.

In the UK the temperature has suddenly shot up and I am doing badly today. Very light headed and weak, this reply has taken me over 40 minutes to type. I know you arent doing so well yourself so I appreciate the time and effort you have put into this. I am still currently wading through the medical papers you have provided! I may have to re read them as my brain isnt working too well. I am having to decide if I need to get my husband home from work. So you know how bad I am!

Thank you hun so much. There does seem to be a link with ACHR and POTS as many people on DINET have reported positive tests but are told they dont have MG. Now either they have MG and arent being treated or this ACHR chappy is responsible for a whole lot more than MG and medical science isnt joining up the dots yet.

Having chatted at length with another Dr she believes it is something to do with the ganglionic (may have really badly spelt that) receptors in the brain. Another MG type autoimmune disease and there is starting to be evidence that POTS is an autoimmune disease where the body is attacking the barro receptors (again bad spelling) - the ones responsible for vasoconstriction and vasodilation. So again Annie as always you are on the ball with your thinking.

Unfortunately when we start getting into that more complicated area of thinking I cant keep up, my mind cant understand that level of thinking! I can only just understand the autonomic nervous system start throwing in the parasympathetic nervous system or central nervous system and its way over my head.

I just want to say a massive thank you for the time you have spent on this and sorting stuff out for me. THANK YOU xx

Rach x