See https://greatnonprofits.org/org/multiple-system-atrophy-coalition
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thank you for sharing.
I have chatted with the UK rep. for MSA many times at Health events.
Ataxia has many overlapping symptoms, it makes sense to talk with other groups
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First diagnosed in 2012 with MSA, I can attest that many symptoms overlap other ataxias. The main one being ataxia itself. Although MSA may present with said different causes (no one really knows for sure) it shares many of the same attributes.
There are other forums, some active some not, that conduct discussions more specific to MSA however, I find that more relatable/informative information is conveyed on this site, and for this reason I must thank you all.
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Yes, symptoms can over overlap, and I wonder how many people realise this when they feel discouraged due to lack of diagnosis. Information is always welcome
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I’m going to the ataxia unit at Mass General Hospital soon and I’m going to ask about MSA. I have POTS and small fiber neuropathy along with episodic ataxia so MSA definitely seems like it could be part of my diagnosis. It’s a clinical diagnosis, though, so there’s not one slam dunk test you get that says “this is MSA.” (I’m going to read your cross post on the hot cross bun sign.)
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MSA typically presents with the Halmark sign of hot crossed bun, however, we’ve learned they are not always present in patients diagnosed with MSA. For instance, I have been diagnosed with MSA, the hot crossed buns sign does not exist.
There really isn’t a concussive test for MSA. Most diagnosis are made post mortem. Patients are thought to have MSA when all other conditions are ruled out.
I hope this helps?
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