MSAA's Relapse Management Meeting - My MSAA Community
MSAA's Relapse Management Meeting
Greaterexp, it's Fancy1959. I wish I was still in relapsing and remitting phase of MS because if I was this web seminar that you found would be very educational for all relapsing and remitting MS patience in the chat room. I think those of us in primary and secondary Progressive MS often get overlooked and left out in the cold. I wish they would think about doing seminars about what we are dealing with as well. For many of us with progressive MS, such a seminar would be very educational and insightful as well.
It doesn't matter if it covers Progressive types of MS it is great that you shared this opportunity with the entire chat room! Keep up the great work. Sometimes the hardest part of a C.A.'s job is informing the chat room members about new information that will be helpful to them. Once again you're doing great!
Since some who start with RRMS eventually "graduate" to SPMS, I wish there could be more information on SPMS, too. Maybe that's a good question for MSAA...
You know it! After about 16 to 18 years of battling this monster I progressed to secondary Progressive MS. And I know I am not alone in this stage of my disease. I agree we should speak up more and question why we don't receive more information regarding the progressive forms of MS.
It's hard to find recent studies. Many I found were well over a year old, and most much older than that.
seekingalpha.com/article/41...
nationalmssociety.org/Resea...
I do hope we see new encouraging research results soon.
We agree, greaterexp ...while there still isn't enough info and resources out there for the Progressive MS community, we try to make sure and share whatever we can compile on our website.
I just direct-messaged you with a list of links...feel free to share with our My MSAA Community, on this post or on a new one!
- John, MSAA
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