Sneddon's Syndrome

I chatted with a woman who eventually realized - through her own research - she had a rare genetic condition after more than a decade of being told it was all in her head, in spite of a dozen brain MRIs showing abnormalities. She said she also had exercise intolerance.

She's doing much better - couldn't work for a decade - on blood thinners.

She wondered if some ME folks may have Sneddon's.

From wiki:
...generally manifests with stroke or severe, transient neurological symptoms, and a skin rash (livedo reticularis). Livedo reticularis appears as a bluish-purple, netlike mottling of the skin. Sneddon's syndrome may instead present with livedo racemosa, which involves larger, less organized patches of bluish-purple mottling of the skin. Both are generally found first in the extremities, both worsen in cold and either may occur without Sneddon's Syndrome or any other systemic disease.

Sneddon's Syndrome can be characterized by: transient amnesia, transient aphasia, palsy, headaches, hypertension, transient ischemic attacks (TIA), stroke,[3] coronary disease and dementia.[4] The skin manifestations may precede the neurologic symptoms by years.

https://en.wikipedia.org/wiki/Sneddon's_syndrome

 

Yikes

Has anyone made a master list of the rare disorders that have been diagnosed as ME?
Might be a good idea that new patients can have eliminated where possible, since we are a disease of symptoms instead of a test even a few percent who have something else or treatable deserve to know so they can either be treated or not wait for a treatment for ME patients then find out it doesn't work on them


Second we probably need rare disease diagnosis and treatment centers in every country who specialize in only rare conditions. Not that the mayo clinic for example has a flawless record...

 

Maybe every quarter of very large countries