Well for those of you who remember me (I joined neurotalk in 2008) I was diagnosed as having seronegative MG in 2007 and then that diagnosis was removed in 2009/10.

In 2011 I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTs) and Ehlers Danlos Syndrome (EDS). Ptosis only seemed to bother me occasionally and my doctors put it down to low blood pressure or EDS.

In April this year I felt the best I had in years. I started to increase my activity levels after years of not doing very much. Within 4 days I was having to have a nap in the afternoons. I noticed when I was trying to walk I couldn't move my legs. It was like my foot was stuck to the floor. I had to shuffle rather than walk. I noticed I was having more problems chewing and swallowing. Then Ptosis came back. Initially for just a day at a time. Now however its back, I have had it for 9 days straight.

Last week I saw my hospital consultant (the one I see for PoTS and EDS) it was the first time hes ever seen me with ptosis and pupil drift. I took a freezer block with me to the appointment and performed an ice pack test in front of him. He said "you do know that's a positive indicator for MG". I laughed and said "seen it, done it and got the t- shirt." He told me "unofficially I think you have MG but I am not a neurologist so I can't diagnose you"

So after a 8 / 9 year break of trying to get the drs to listen to me about my muscle weakness and Ptosis, I am back on the hamster wheel of attempting to get diagnosed. You can see photos of my ptosis on my blog - the post is called Ptosis again http://http://wp.me/p4zBAs-mU

So as I thought I am back where I started I'd pop in and say hello!

Rach