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So disheartened

Neuropathy | Last Active: Aug 17 10:08pm | Replies (34)

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@stallen

Hi Aaron…sorry to hear your neurologist whom you liked left the area…I’m sure it’s so frustrating. I was curious what led your neurologist to lead in the direction of neuro sarcoidosis? I assume unique symptoms…and or some testing?
Best wishes in finding another neurologist.

Steve

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Replies to "Hi Aaron…sorry to hear your neurologist whom you liked left the area…I’m sure it’s so frustrating...."

Sarcoidosis runs in my family. This part of this paper (https://www.ccjm.org/content/85/10/801) describes my symptoms to a T: “Random patterns suggest an immune cause

Symptoms may also have a non–length-dependent distribution that is asymmetric, patchy, intermittent, and migratory, and can involve the face, proximal limbs, and trunk. Symptoms may vary throughout the day, eg, starting with electric-shock sensations on one side of the face, followed by perineal numbness and then tingling in the arms lasting for a few minutes to several hours. While such patterns may be seen with diabetes and other common etiologies, they often suggest an underlying immune-mediated disorder such as Sjögren syndrome or sarcoidosis.8–10 Although large fiber polyneuropathy may also be non–length-dependent, the deficits are usually fixed, with no migratory component.”

My (former) Mayo neurologist knew the author (Dr. Tavee) and agreed after all the testing that I was probably a fit.