Many of you know of the UK-based Sarah Matheson Trust, which is now called the Multiple System Atrophy Trust. They have a great website — msatrust.org.uk — with high quality MSA information.
I was digging around their website tonight, when I realized that they have a new forum area. Registration is required to post to the forum but it’s not required to read posts on the forum. Here’s a link directly to the MSA Trust Forum:
www.msatrust.org.uk/our-forum/
The two “hottest” topics on the Forum are about “diagnosis” and “symptoms compared.”
In a post about whether MSA can occur without orthostatic hypotension, one of the RNs at the MSA Trust replied as follows:
“Not everyone with MSA will have postural hypotension. We would expect to see an autonomic dysfunction for it to be diagnosed as MSA however. People living with Parkinson’s can have a postural drop, but the Parksinson’s medications can also lower blood pressure. Not straight forward to reply to I am afraid as everyone is so individual.”
This forum is certainly not as active as the ShyDrager Yahoo!Group but the discussion is easy to follow on the forum.