Dealing with a bunch of symptoms: rash, sun sensitivity, swollen lymph nodes, headaches, and stomach
in Health ·
Kate Collins67 said:Generally, you have two paths here. You can have your primary care physician refer you to an immunologist, and then follow their lead from there. The other option—if you run a fever again without any clear cause—is to head to the ER at a major hospital like Mayo Clinic. If you do, make sure you definitely mention that butterfly rash and the swollen lymph nodes you had earlier... if luck is on your side, they might admit you to the rheumatology or clinical immunology ward, which would get things moving. Once they rule out an autoimmune issue, you can finally stop worrying about it.
While waiting for all that, if I were in your doctor's shoes, I’d go ahead and order a serum protein electrophoresis, immunoelectrophoresis, repeat a CBC, fibrinogen, urinalysis, 24-hour urine protein, lupus anticoagulant, anticardiolipin antibodies, and C3 and C4 levels.
If a new fever hits and you can't get in to see an immunologist right away, it would be smart to check C3, C4, and total complement alongside your routine labs.
Thank you so much for this... I'll talk to my doctor and we'll see what happens next.
Maria Fisher46 said:I’d also like to touch on the part regarding the headaches, the neurological exam, the EIA, and the Carbamazepine.
Dear Angie, there is actually a specific group of headaches known as dysrhythmic headaches. These can present in various ways—usually appearing as migraines—but they carry one distinct characteristic: abnormal findings on an EIA (most often in the form of dysrhythmic changes). If your imaging comes back normal, then we're looking at what's called a primary headache.
Unfortunately, there isn't a complete scientific understanding yet of why these headaches occur, so you might not get a definitive "why" when asking about the root cause... What we do know is that these types of headaches typically respond very well to medications in the anticonvulsant class. That’s why you were prescribed Carbamazepine. It can be confusing for patients to wonder why they're being given that kind of medication if they haven't been diagnosed with epilepsy, but you don't need to have epilepsy to be prescribed it—it's used for several different conditions.
Now, whether that headache is eventually linked to another underlying illness or is just its own standalone thing, doesn't change much in terms of treatment... since the meds are the same. If standard painkillers don't work and there's a dysrhythmic finding on the EIA, the move is to try an anticonvulsant.
Essentially, I agree with Kate Collins67—getting an evaluation from an immunologist is vital, and it would be wise to get some of those tests done while you wait for that appointment.
I still feel like that facial rash, based on the photo, isn't quite typical for seborrheic dermatitis, so it wouldn't hurt to get a second opinion from a dermatologist.
As for the lymph nodes—I'm not sure if they're still swollen or not?
Best regards. 🙂
I didn't give you the whole story... :S
After my neurologist referred me for a follow-up EIA, I actually stopped seeing him altogether. My primary care doctor was the one who ended up prescribing the Carbamazepine—though, from what I gather, not everyone agrees on that approach. We started with a ten-day trial at half a 200 mg tablet, and once I felt things improving slightly, I moved up to the full dose.
My doctor told me not to stress too much when reading the medication descriptions, and I also found out that Carbamazepine is sometimes used for headaches as well.
What I'm wondering is... if my first EIA showed "dysrhythmic" patterns, why didn't we try the Carbamazepine back then? Or even after the subsequent tests? On the second test, it mentioned in parentheses that such a finding could actually occur in a perfectly healthy person.
Even though I told the neurologist that I’ve already tried everything from Advil and Aleve to Tylenol and Excedrin—some worked sporadically for maybe a month before stopping altogether—he kept suggesting new stuff like Indomethacin or Aleve.
And then there are the lumps...
So, those ones under my right ear cleared up around the ninth month, but they actually came back about a week ago—and now, if I touch them, I can tell they're a little tender.
The one under my armpit has been there for seven months now and just won't go away.
It’s really not in my interest to be sick, which is why I want to get this sorted out. I honestly don't understand how any doctor could look at lumps that have stayed enlarged for more than a week or two and say it's nothing or that I don't need a biopsy.
Look, I'm no doctor, but that's just how I see it. I told him I'm afraid to play sports, and honestly, I'm even afraid of working too hard lately—even though I've been overworking myself recently—because I'm scared my immune system is shot and I'll end up stuck in bed again.
Thanks for checking in, Nicholas Myers,
Best,
