Great article on the odyssey of being Dx’d with SPS, dismissed as “stress” etc.

[Sunshine 2]

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[agate]

Very informative--and I didn't know about the organization this woman founded:

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Have you ever tried reaching out to the Johns Hopkins center that is mentioned in the article?

It's good to know that there are at least a couple of resources out there.

[Sunshine 2]

Yes, but they will not respond to you unless you are their patient : Understandable of course. My history, symptoms and blood work are completely in line with the diagnosis, so no need to reach out to Johns Hopkins.

There is a SPS Facebook page with posts about Dr. Newsome at Johns Hopkins: Most sing his praise. But many were turned off by dismissive ness and state that if the clinical and blood work and EMG results are not in lockstep with SPS criteria , they are not accepted as having SPS and thus SPS care. They feel that because of the research in his Lab, they speculate that this drives that kind of rigidity.

[agate]

Sounds as if you're getting along nicely without the Johns Hopkins people. You have to wonder about some of these highly publicized specialist medical centers anyway.