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Body odor without sweat -- Sjogren's Syndrome?

Autoimmune Diseases | Last Active: Jul 5, 2023 | Replies (19)

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@peabody88

@redhead63 - Fascinating! Thanks for replying to my post! I'm a very complicated situation, because my Sjogren's antibodies AND my ANA have come back negative, and I only had one marker come back slightly positive on the Early Sjogren's panel. In addition, I'm on a plethora of medications for a variety of other health issues, which is what we've always attributed my dry mouth/eyes to. In fact, as I'm writing this, suddenly it seems far-fetched to think that Sjogren's could still be the answer, but the rheumatologist still seems to think it's a possibility, and it sure seemed to "fit" (at least before I started listing the negative test results lol). I'd never read anything about the sweating thing though, but it's something I've noticed and seemed to make sense with Sjogren's, so I was curious if anyone else experienced something like that, in connection with Sjogren's or not.

If you don't mind me asking, how long ago were you diagnosed, and how long A) were you actively pursuing an answer before being diagnosed, and B) how far back do you recognize symptoms now that you know more about it?

Another interesting observation! I've been really struggling with whatever's going on with me for a few months now, so it's been a fair stretch since I've really exercised like that, but I definitely remember my cheeks always getting super red and I've always gotten easily overheated, and I don't think there's usually much sweat involved (although of course that's subjective, and could be an exaggerated memory). Definitely got me curious now!

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Replies to "@redhead63 - Fascinating! Thanks for replying to my post! I'm a very complicated situation, because my..."

You should go on the John’s Hopkins Sjogren site and review the information there. I had a complicated case too where my docs all thought I had a a lot of unconnected issues. But, at Mayo AZ they did autonomic testing (tilt table), a nerve biopsy, and mast cell tests. All came back positive. Apparently in some Sjogrens affects the autonomic system and causes small cell neuroatby. I had red flushing cheeks like you, recently I noticed when I have a flare that no matter what deodorant I use my arm pits stink, I was heat intolerant, I had weird skin neuropathy: my skin would feel like it was sunburned. I see Dr, Goodman in neurology in Az and he discovered all of this. He put me on some meds that have really changed a lot of it. Most docs - even rheumatologists do not get Sjogrens patients whose symptoms go beyond their salivary glands, and eyes - it is out of their wheel house. Hope this helps!