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Autonomic Dysfunction/Dysautonomia and SCLS

stedrick Message
22 Apr 2022, 05:10 PM

My physicians are wondering whether my SCLS is triggering autonomic dysfunction [in paricular, daily hypothermia], or whether the hypothermia is triggering mild flairs. Is there any research on the subject of dysautonomia being a cause rather than a symptom  of SCLS?

I would be most grateful for any information, including fellow patients' experiences. I will be seeing an autonomic neurologist at Massachusetts General Hospital in July, but my physicians are very worried about my temps as low as 90.1 three to four times a day, accompanied by rigor & blue extremities, followed by sweating and bright red extremities & face.

Susan

stedrick Message
23 Apr 2022, 11:56 AM

So far, I've only found one study, conducted in Italy, that postulates that chronic dysautonomia may trigger SCLS flares in addition to SCLS triggering temporary autonomic dysfunction.

Susan

aporzeca Message
24 Apr 2022, 01:07 AM

Susan,

I don't know and haven't heard anything about it, so I suggest you write to and ask Dr. Kirk Druey at NIH, kdruey@nih.gov