Thank you again for taking the time to comment, especially when I'm not on here very often. Since 2010 I have felt a bit of a fraud associating myself with MG and have deliberately distanced myself from MG forums.

Not only do I respond to mestinon but I am also positive on the ice pack test, MG is the only disease that responds to this. It amazes me that the Dr's seem to think I can make these symptoms appear and disappear on a whim!

Thanks for the heads up re - gabapentin, they want me to take it due to the burning I have in my left leg and to try and get on top of my pain. I didn't realize there was a problem with this drug and MG. This could be tricky as officially I don't have MG and voicing concerns about it may cause some issues.

I am in so much pain at the moment I am at my wits end. I am hardly sleeping and I am waking up shaking with the pain. I have rung my Dr's practice as I just can't get on top of it. Its been worse since the rheumy visit last week as she made me walk down the corridor telling me "just because you are in pain doesn't mean there is anything wrong". Well something is wrong now.

Thank you so much also for taking the time to read my blog. I hope to give a realistic portrait of what life is like with chronic illness and in the diagnostic wilderness. My aim is to help others that are going through the same thing realize that they aren't alone and with support they can get the answers.

I have already achieved part of that goal as someone in a far off land has just been diagnosed with EDS after their Dr heard my story. Is it greedy to want to help one more?

The medical profession needs to start seeing Zebra's and not just horses when they hear hoof beats.

Thanks again

Rach