Member
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Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
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Member
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
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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
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Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.
My blog address is . .
Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
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