Hi Annie,

Yep I am back! lol like a bad penny.

My PoTs consultant has raised the issue of CMS with the neurologist he has referred me to ( I received a copy of the letter today) as I have had double vision since I was a kid especially in the evening. I was a voracious reader as a kid getting through a book or more a day. I loved Enid Blyton, I think I have read everything pretty much that she ever wrote.

The Huperzine A stopped working, either because due to it being a "memory" supplement there wasn't enough magic juice in there or because it was a supplement not all tablets were created equal. I have mestinon now and I am taking 30 mg twice a day. Yesterday was a bad day and the tablet was only lasting 90- 120 minutes.

I have been trawling through the forum as I feel like a complete newbie there is so much I don't remember about MG, which I used to know inside out and backwards. Yesterday after reading a post, I decided to try holding my arms out in front of me. I lasted 15 seconds before it became too painful due to muscle fatigue to hold them up any longer. Then I couldn't use my arms for an hour due to the shaking. Not my brightest idea but the weakness has crept up on me and I didn't appreciate how bad it is.

My PoTs symptoms feel a lot better when I am on mestinon but that is no surprise as it is an off label treatment here in the UK for PoTs as it increases standing blood pressure. The only problem is I have the usual stomach problems, lots of gas, needing to poo (sorry if thats TMI) much more LOL! I have noticed my bladder situation has improved a lot since taking it so I wonder if my continence issues are to do with MG (some of them).

My PoTs consultant is sure that it is MG or some other neuromuscular junction issue. I don't think he will let it rest until we know what is wrong. Hes a good man. He helped me so much last year through my spontaneous CSF leak.

Thanks Annie, its nice to be back amongst people who know and understand,

Rach x