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What if it is "All in My Head"?

Visiting Mayo Clinic | Last Active: Dec 14, 2018 | Replies (15)

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@peabody88

Rheumatology: She's considering seronegative Sjogren's Syndrome; my tear osmolarity was off the charts (right eye 357 and left eye less than or equal to 357 with range of 275-307; Schirmer's was 7mm in both eyes after five minutes, which is mild to moderate, but they're something about the way it's done can cause false high readings so they're retesting in two weeks after I've used eye drops daily. ANA panel and Sjogren's antibodies have been run twice, negative, and RF factor and CCpeptide were negative; early Sjogren's panel was all negative except for Carbonic Anhydrase VI (CA VI) IGG Antibodies, which were slightly positive at 22 (normal

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(Ctd.) Rheumatology: She's considering seronegative Sjogren's Syndrome; my tear osmolarity was off the charts (right eye 357 and left eye >357 with range of 275-307; Schirmer's was 7mm in both eyes after five minutes, which is mild to moderate, but they're something about the way it's done can cause false high readings so they're retesting in two weeks after I've used eye drops daily. ANA panel and Sjogren's antibodies have been run twice, negative, and RF factor and CCpeptide were negative; early Sjogren's panel was all negative except for Carbonic Anhydrase VI (CA VI) IGG Antibodies, which were slightly positive at 22 (normal is less than 20). Complement C3 was normal at 160 (reference 83-193) on 7/2, then slightly elevated at 200 on 8/16. Complement C4 was normal both times at 37 and 40 (reference 15-57). Total tryptase was slightly elevated at 12 (max 11).

MRI of brain and spine was all normal except for mild disc bulging at C4-C5 and mild mid-cervical spondylosis. Other than the mentioned abnormalities above, like the liver lesion, linear gastropathy of stomach and umbilical hernia, the rest of the imaging was fine. The only thing left would be to re-do the CT or ultrasound of abdomen and pelvis, with a note not to focus on everything but the liver lesion, since that's was focused on last time; or a transvaginal ultrasound - it's just curious that two people doing the pelvic exam have felt absolutely confident there was poor borderline.

I don't know why I wrote this all out. I think I was hoping putting down the abnormalities something would jump out at me, or a pattern would be evident, but still nothing. I will forever question the thyroid I'm sure, since it seems to flip when I'm having some weird symptoms. I wonder about the liver inflammation from the biopsy in 2016 -- if that could have been the result of the gallstones, or something else. I do find Lyme suspicious, since this all started with that rash and I've jumped from one positive band to three, but I've been on the treatment for it and while I feel like I see a temporary dip in temperature (max for the day was 99.4 one day), I don't know if that's actually causal or just the way it seems to cycle. I find Sjogren's Syndrome very compelling; I've been tested previously for autoimmune disorders because I seem to have constant health problems and a really poor immune response; I've had issues with dry eyes and dry mouth since I was a teenager and dry skin since I was a baby; it would explain the vaginal issues as well (your body can put out excess discharge trying to accommodate, the same way your eyes can tear/water without reason when you have dry eye, and you're at increased risk of yeast infection from the dryness); but I don't know how you differentiate between medication-caused dry eye/mouth and Sjogren's. Some type of mast cell activation disorder also intrigues me, as I've been plagued by lifelong allergies and sinus infections, and it can be associated with hypersensitivity to some medications (which maybe explains the seeming "trigger" of Sulfa). I'm convinced that some day they're going to diagnose me with a thyroid disorder -- whether it eventually stabilizes, or they test for thyroid autoantibodies and find that it's fluctuating back and forth between hypo- and hyper-thyroid. I'm interested to see what the repeat TB test shows -- if it's still positive, I would be more inclined to believe it's an extrapulmonary version (particularly urogenital) than latent TB since I had such a recent negative test. I suspect a combination of some of these things might be at fault rather than one thing explaining everything -- for example, underlying Sjogren's made me more susceptible/high risk for catching TB, or I did have a skin infection or Lyme initially, and then the treatment triggered insane response due to a mast cell activation disorder.

And then of course, the one that scares me most -- I don't think there's any doubt I started with some type of infection, since I had the elevated WBCs, but then the theory would be starting in July, I developed some kind of unconscious anxiety or obsession with being sick, and either by expecting symptoms, caused them, or am over-blowing or over-experiencing them from focusing on them. Maybe my temperature is naturally higher, or my thermometer is faulty. Maybe my CRP is naturally elevated (I haven't been able to find it was ever measured before, although I did find a normal ESR), or maybe it is high due to gingivitis or my birth control pills or being slightly overweight. Maybe that liver inflammation in the biopsy is due to non-alcoholic fatty liver disease and that's the cause of the elevated LD5, or it was just due to the gallstones at that time and if you did a biopsy today it would all be gone and the benign liver lesion is causing the elevated LD5. Some days I feel very confident it's not all in my head -- that's a lot of maybes to make this psychological, and there's a lot of reasons I could refute them (I used two different thermometers, I read that my range of CRP typically indicates an underlying inflammatory issue regardless of other factors like birth control pills, etc). But there always seems to be that little devil on my shoulder, sometimes whispering/sometimes shouting, "but maybe..."

Kudos to you if you're still reading this. It reminds me of "You've Got Mail", when she says "I don't really want an answer; I just want to send this cosmic question out into the void."...Although if you have any answers, advice or observations, please, feel free!! Good night, void!