I stumbled across this multiple system atrophy-related blog tonight:
http://cmsasg.graphimania.ca/
Canadian Multiple System Atrophy Support Group
Information for the Canadian victim and caregivers
There is only one introductory blog post, made in late January 2012. I’ve copied it below. If, later on, you see additional posts there that make worthwhile reading, please let me know!
In a section on “Clinical Trials,” there’s info about the rifampicin trial going on in the US. The Canadian blogger notes that he/she is also trying rifampicin, prescribed by an MD in Canada.
There is a section on “What is Multiple System Atrophy!”
Robin
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My Experiences With MSA
Posted on January 29, 2012
The real battle is information, the diagnosis of MSA and finding a knowledgeable Doctor is a struggle and that’s where I hope to help my fellow Canadians. I hope to do this by gathering all the useful information and resources I can collect into one central location. I would also encourage any person or organization that wishes to contribute to feel free to post content to this site or an email address/link and I will respond asap.
My initial personal experience was one of frustration and disappointment followed by some seriously amazing support! I will share my experiences with you in an effort to hopefully spare you some of my frustrations! I suffered with chronic exhaustion, stiffness of joints, sore muscles with various other ailments and symptoms. My doctor did test after test, I visited specialist galore all to no avail, these were later identified as MSA symptoms.
The simple truth was that my doctor simply had no exposure or experience with MSA, and it was only by luck that after years of working together to try and find out what was wrong we got a break. He was attending a seminar presented by Dr. Joyce Lee and after listening to an in depth diagnosis he realize that he indeed knew somebody that was showing the symptoms she was describing, me! Shortly after that I had a session where my blood pressure crashed into the low 70s and then skyrocketed to the high 190s at one point rose to 215 and above, totally out of control and unregulated!
This proved to be a turning point as we all know unregulated blood-pressure is one of the more serious problems with MSA and was confirmation of our suspicions! An appointment was booked with Dr. Joyce Lee for a conclusive diagnosis which turned out to be positive for MSA.