Considering second opinion after 8 months progressive lymph swelling

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Considering seeing a different doctor about my issues.

Beginning at the start of April, I gained a swollen left submandibular salivary gland, swollen throat, and a swollen left submandibular lymph node. No sore throat, no pain or tenderness, no fever, sweats, or notable weight loss. Imaging and simple blood and thyroid tests didn't find anything notable, so I waited it out for a few months. Took a month of antibiotics, but didn't see any changes.

In September, I started having upper chest tightness, more fatigue than usual, and a left infraclavicular node began to swell. At the start of this month, November, far more lymph nodes began swelling. So far, these include bilateral posterior cervical, bilateral inguinal, left supraclavicular, and possibly additional nodes in the neck, chest, armpits, and groin (based on persistent unexplained discomfort and aches in those areas).

STD panels ruled out HIV and such. An EBV panel showed signs of a past infection, but likely from months, years, or possibly even decades ago. CBC was normal, though my white blood cell count was on the lower end (I also have a larger than normal red blood cell size, but that's been constant since infancy). Tuberculosis was negative, inflammatory markers were non-existent (C-Reactive, SED, and Rheumatoid all had very low results). Notably, I was positive on an ANA screen, with a Nuclear/Speckled pattern, but the 1:80 titer was too low for the doctor to consider it a concern. I do have a family history of various autoimmune disorders, including MS in my father, so that could be a coincidental result that I may pursue separately.

Despite gradually gaining symptoms over nearly 8 months, with a large amount of developments in the past 2 months, my doctor believes it all to be the result of an EBV infection, and suggested I "keep an eye on it, and call if any nodes begin to get bigger", with very little explanation otherwise. Based on what I can find, EBV doesn't generally result in these sorts of symptoms persisting for such a long period of time without being considered a rare (and dangerous) chronic form of the disease (one I honestly consider quite unlikely). Painless swelling of so many lymph nodes (particularly the supraclavicular now) seems like the sort of thing that would warrant continual testing to confirm a diagnosis, as opposed to the wait-and-see procedure that's being suggested.

I can understand that the symptoms aren't currently definitively indicative of any particular diagnosis, but the differential has a lot of concerning possibilities, and I feel like my doctor is worryingly laissez-faire about it. Am I being neurotic in believing my cursory perusals of medical information are leading to a different conclusion than a trained and experienced GP? Or does it seem accurate that it's not a good idea to assume something like EBV is the culprit in this case?

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  • Posted

    Hi! How are you now? Any better?

    Were any of your enlarged nodes checked by ultrasound? That seems like the first thing to do.

    I have two in my left armpit that are giving me hell for the last month and a half. Ultrasound and blood clear, everything is fine. But they are visible and the whole armpit hurts, as well as some nerve pain down my arm 😫

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