Meetings and Gatherings >> Local Meetings and Gatherings >> Anyone in St. Louis area?

Message started by dlw1967 on Jul 18th, 2013 at 6:49pm

Title: Anyone in St. Louis area?
Post by dlw1967 on Jul 18th, 2013 at 6:49pm
I was recently diagnosed with MM and would like to talk to someone else who has MM. I have not had any strokes or anything that drastic as of yet. Does this disease progress quickly or over years?

Title: Re: Anyone in St. Louis area?
Post by gotchlorine on Jul 19th, 2013 at 10:43am
Progression rates can be different from patient to patient. I would recommend to not make hasty decisions, but not to sweep it under the carpet, either. Try to educate yourself as best as possible, then move forward with your decisions. Having a doctor with a lot of moyamoya experience is high on the list of things to ask about. Ideally, you want someone who can tell you about their patients' long term outcomes.

By any chance, are you on Facebook? There is a decent size group of people on the World Moyamoya Day - May 6th page. People are being encouraged to connect with others in their geographical area, for support and awareness purposes. If you are on Facebook, you might give it a try. Good luck!

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