I’m not saying it’s not lupus,” my rheumatologist told me yesterday, “but we didn’t find any of the markers we tested for…What I’m saying is we don’t have a diagnosis yet.”

I’m torn between relief and frustration after this latest appointment. On one hand, if I’d had a definitive diagnosis, we could have moved forward with some sort of treatment to get me feeling better. On the other hand, a definitive diagnosis would’ve meant I have either SLE (lupus), RA (rheumatoid arthritis), or some other chronic inflammatory condition. I still may have lupus, according to Dr. A, but the 12 vials of blood I had drawn two weeks ago didn’t reveal it.

What I do know is that my CRP was still high, though not as high as it had been the month before. The “abnormal high reference range” for CRP is 0.0-0.3 mg/dL. My CRP tested at 2.63 mg/dL. Nothing else was apparently notable, and the only other “selected results” on my office visit summary were normal levels for C3 (136 mg/dL), C4 (31.4 mg/dL), and CPK (35 units/L).

He didn’t even mention RA, so I think that’s out of the equation now. Lupus is up in the air, and he wants me to see a dermatologist to determine whether or not my discoid rash is related to my inflammation. A butterfly rash (that I don’t have) is more common in lupus patients, but discoid rash can be associated with it. When going through my list of symptoms in my records, he raised his eyebrows and emphasized the word “significant” when he got to the rash. I’ll be getting a call when they find me a dermatology appointment; when I asked for doctor recommendations, Dr. A had said “first available.” I don’t know what else will happen with the dermatologist, but I know I’ll be having a biopsy.

Because my pain levels have been on the decline (overall) – along with my CRP level – Dr. A said there is still a chance that this whole thing has been some sort of allergic exposure. I don’t know what the heck I could be allergic to that suddenly affected me on May 7 when it had never affected me before, but if that’s the case, that would be a better diagnosis in the long run because of the treatment options and potential avoidance of the allergic trigger. [Update 2024: Not quite allergic. Most likely mast cell activation, which is ongoing.]

Dr. A said he may still do a bone scan, where they inject something to locate inflammation in my body, but it could be unnecessary if it ends up being an allergy that goes away on its own, albeit slowly. Since the bone scan sounds really unpleasant, I don’t mind putting it off for now, especially if my inflammation levels are on the decline. The test might not be entirely indicative of my condition if I’m in the downswing of a flareup or something.

I may ask my primary care doctor about seeing an allergist or sending me to get that MRI she said she was willing to run back when I saw her in June. I’d turned her down on the MRI as a “not now” because I didn’t realize its diagnostic significance for something like MS (multiple sclerosis).

[Update 2024: Still probably not lupus, but I have been diagnosed with Sjogren’s disease, and other autoimmune diseases may remain undiagnosed.]

Read my Big Fat Medical Update for more details.

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