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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.


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.


aporzeca Message
24 Apr 2022, 01:07 AM


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