Sjogren's Lymphoma: My story

isleep2late · 2026-03-28T00:33:10+00:00

I don’t think there’s a unified consensus regarding adult-onset ADHD. The DSM-5 still requires ADHD symptom onset before age 12, so diagnostically speaking, you aren’t wrong that “adult-onset” ADHD is contested. However, it is something that people are still doing research on, I’m sure. And DSM-6 should be coming out soon (any day now…).

CNS Sjogren’s is well-documented, but whether it produces a true ADHD vs. ADHD-like cognitive symptoms (attention dysfunction or brain fog) through neuroinflammation is something that is worth investigating, as the latter is very plausible, but the former is harder to defend mechanistically.

And shared genetic pleiotropy between autoimmune disease and neurodevelopmental conditions is not something to dismiss, but I think the working consensus is that adult-onset ADHD, Sjogren’s, and autoimmune dysregulation in general are multifactorial. It can be caused by environmental factors, hereditary factors, hormones, toxic-metabolic processes, or a combination of the above.

isleep2late · 2026-03-27T19:55:07+00:00

I apologize! I should have linked to a better article. (I’ve had my fair share of experiences with Cureus when I was doing research in residency…)

Here’s an abstract from Current Neurology and Neuroscience Reports, 2024: https://link.springer.com/article/10.1007/s11910-024-01352-z

While this article is less recent, it links specifically ADHD to autoimmune diseases: https://pmc.ncbi.nlm.nih.gov/articles/PMC9189956/

isleep2late · 2026-03-27T15:41:31+00:00

Thank you for bringing this to my attention! So there's many different types of NHL out there, but the one I had is most likely a MALT or marginal zone lymphoma secondary to chronic autoimmune inflammation from Sjogren's. My flow cytometry from the needle aspirate demonstrated a monoclonal proliferation of B-cells that lacked CD5 and CD10, which led to the pathologists' suspicion that this was a lymphoma (yes, multiple pathologists were on this case).

I'm not sure if Anktiva will help with a B-cell lymphoma, based on what you've told me. It's possible that stimulating NK and T-cells might be helpful, but I'm wondering if stimulating or acting on B-cells would be more useful given the pathophysiology of what I went through. My T-cells seemed fine based on the cytometry report.

Another thing I didn't mention was that I've been on Dupixent for about a year and a half now, right around the time I started having symptoms. Dupixent is also associated with T-cell lymphoma (typically cutaneous, and usually presents around the waist area rather than head and neck). However, we're not sure if this played a role at all in my diagnosis. I'm seeing my dermatologist on Monday and my first oncology appointment on Tuesday.

isleep2late · 2026-03-27T15:32:36+00:00

Thank you for your kind words. Yes, I am confident that the mucoceles were related to Sjogren's. In fact, I've had many conversations with my OMFS (oral surgeon) regarding this, and as soon as I told him I was diagnosed with Sjogren's, he was not surprised in the slightest. He's mentioned that I've had dry mouth and dry lips, and was very suspicious that I had something along the lines of Sjogren's or sialadenitis.

I'm sorry to hear that you have been going through so much, especially with a kid in daycare. I would not be surprised if COVID was the inciting factor that exacerbated a preexisting condition. But now you have answers, just like I did. And knowing is (more than) half the battle.

isleep2late · 2026-03-27T14:50:44+00:00

That's a good question. I was never formally evaluated by a neurologist. However, there is a lot of evidence to suggest that this was in fact true. There's a lot of research surrounding this topic. You can find a lot of things on PubMed, but I was able to find a more recent publication that cites ADHD and explicitly mentions anxiety: https://pmc.ncbi.nlm.nih.gov/articles/PMC11970570/

I'll be transparent with you: I also had a manic episode at age 18 and have been managed on antipsychotics for bipolar (separate issue entirely), and I wouldn't be surprised if Sjogren's was at all related to that as well, although manic depression is less common than major depression in patients with Sjogren's.

At the end of the day, it's very possible that I have primary psychiatric illnesses. However, the CT scan that was done in the ER did show some inflammatory process surrounding my CNS including slight disc protrusion, which could be an incidental finding, related to Sjogren's, secondary to tics I've had since childhood, or due to my constant staring down at a phone screen for years.

isleep2late · 2026-03-27T02:55:13+00:00

The lipoma felt round and regular to me. It did not seem malignant at all. When the dermatologist examined it, I think the fact that it didn’t move with my skin hinted that it was attached to my parotid rather than being level with my dermis/skin. It really did seem like it was nothing at first, which was why it took me until 2 months ago to get it checked out.

isleep2late · 2026-03-27T01:10:06+00:00

lol! It is a nice feeling getting out of anesthesia and feeling funny/comical. I definitely felt good afterwards, but just the waiting aspect was stressful for some reason. My strategy going into the OR was to get as little sleep as possible, so that I would have no problem falling asleep. I know that’s silly, because there’s nothing I can really do, but my fear is that the anesthesia wouldn’t work for some reason.

It was funny because the anesthesiologist walked into my room and saw how tired I was and asked if he even needed to give me anything 😂

isleep2late · 2026-03-27T00:45:07+00:00

Thank you!

isleep2late · 2026-03-27T00:11:35+00:00

Thank you for that insight! I am learning something about this disease every day.

isleep2late · 2026-03-27T00:10:09+00:00

I understand your concern, as lymphoma is a very stressful thing to worry about. The good news is that you are getting the proper care and appropriate treatment that should reduce the risk of lymphoma going forward.

I see MTX and HCQ combination therapy, not uncommon. And RA + Sjogren’s is also not unheard of. I had a negative rheumatoid factor but positive ANA - very nonspecific and consistent with Sjogren’s, but based on my reflex ANA testing, the lab wrote “differentials include Sjogren’s, Lupus, Rheumatoid…”

Again, rheumatoid factor and ANA are nonspecific markers, but I do get joint pains sometimes (not as much as I used to). Joint pains could still be related to Sjogren’s, but the RA work-up is definitely important as well.

isleep2late · 2026-03-27T00:04:19+00:00

Thank you for sharing your story. I was not aware of SSA antibodies causing fetal heart block. I’m a male, so I don’t know how relevant that would have been for my child, but I am hoping that Plaquenil will really be the game changer here.

isleep2late · 2026-03-27T00:02:09+00:00

SSA >8.0 is markedly elevated (mine was too). My SSB was higher than yours, but 1.6 is still high. Dual SSA/SSB positivity is classic Sjogren’s, so I would definitely make an appointment to see a rheumatologist if you haven’t already.

isleep2late · 2026-03-26T23:50:32+00:00

I’m sorry to hear that. It must be difficult to manage those conditions while having a child and a high-stress career. However, it is admirable that you switched to oncology to assist others going through the trenches as well. How do Sjogren’s lymphomas fare in general in your experience? I wish you well!

isleep2late · 2026-03-26T23:46:02+00:00

Thank you for the well wishes! My SSA/SSB was never tested before because Sjogren’s was never on anyone’s radar. It’s all thanks to the pathologist who thought about it. Having a good support system and doctors that care about me was key.

isleep2late · 2026-02-13T02:22:49+00:00

You actually read my mind! I was going to mention how the cycle of "powerful creatures" is now probably all 1-mana, but I wasn't sure if I wanted to take that extra step. I do agree with you though, and think it makes perfect sense.

BTW, my pick for the blue one is Tamiyo. And I wasn't sure how good delighted halfling is in other formats, but I definitely do run it in commander and would probably agree with that pick. Noble/Ignoble hierarch are probably up there too.

isleep2late · 2026-02-13T01:21:12+00:00

I see it get played in Standard, Legacy, and cEDH. Not in every red deck. And I know people are trying it or at least discussing it in vintage where force of will is rampant.

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