Posts by brightgull95

Go see an internist. As for all the other specifics, you really need to grill the two doctors actually managing your care.

James Peterson7 said:My rheumatologist recommended I get a puncture of a lymph node in my groin and an echocardiogram.
The puncture was done and everything came back normal, but during the echo, the cardiologist mentioned lymphadenopathy. I've already scheduled a follow-up with the rheumatologist on May 29th.
So, do you think I should ask the rheumatologist about lymphedema? I'm attaching the ultrasound and blood work results here.

Yes, absolutely—ask both him AND the cardiologist who diagnosed the lymphedema in the first place. You had a puncture, sure, but it sounds like the rheumatologist wants a full biopsy (excision) of that node.

James Peterson7 said:Thanks so much for getting back to me so fast.
Regarding the lymph nodes—where do I even start? What kind of tests should I actually be looking into? So far, everything has been laser-focused solely on the sarcoidosis.
And what about this tingling sensation in my fingers?
It’s keeping me up at night. I can't sleep because it feels like there's actual fire in my fingertips. Then, when I get up to walk around, the feeling in my legs improves, but as soon as I lie back down, the tingling starts right back up again.

Look, you need to take this question to the two doctors who have been treating you. It is absolutely impossible that they just gave you a verbal suggestion to "do this and that" without documenting specific recommendations somewhere. They had to have put something in writing regarding what needs to be done.

Honestly, you should go for both. You really need to get that lymph node biopsied just to finally settle the debate once and for all: do you actually have sarcoidosis or not? Look, ACE levels are definitely one piece of the puzzle when you're trying to diagnose sarcoidosis, but it’s far from the only factor, and it certainly isn't the deciding factor on its own. Once that's settled, you can actually start focusing on the lymphatic issue. We need to figure out what's actually causing those swollen shins.

vividpuma2 said:But if the calprotectin levels are low and there aren't any typical symptoms, does that rule out cancer?

Absolutely not.

Cancer can actually trigger localized inflammation in the colon, which is why you might see elevated calprotectin levels in a stool sample. It’s just one possibility. If there's even a shred of reasonable suspicion regarding cancer in a specific organ, you really have to run certain imaging tests to get a clear picture of what's happening.

Kimberly Morris said:Dr. Alpgaueur,

I really have to address one specific point you made—it’s actually the crux of the whole issue—where you mentioned the need to move from diagnosis to actual treatment as quickly as possible. And honestly? That is exactly where everything falls apart for me...

Here’s the deal: Triptans sent my blood pressure through the roof. Beta-blockers tanked my heart rate. And both of those migraine biologic injections? They gave me a massive rash. It got so bad that I ended up seeing a clinical pharmacologist who basically told me those injections were strictly off-limits.

So, what am I supposed to do?! Today at work, I was hit with such horrific vertigo right when I was supposed to be giving a lecture. In a moment of pure desperation, I popped some Azalonum, which just knocked me out. I ended up delivering the entire presentation while sitting down, babbling like a total drunk... I don't even remember how I managed to drive home... This spinning sensation is absolutely unbearable...

I don't know. I actually wrote earlier that I doubt there are even two doctors in the entire United States who could actually figure out which therapy would work for you.

Sure, it’s technically possible, but let's be real—that's definitely not what's happening in your case right now.

quietbison86 said:I’ll restate the question here for @brightgull95—and if I need to upload a screenshot of the entire lab report, let me know. Everything looks fine except for those two specific parameters, plus my kidney function is at 65 (which is technically within range, though they say it's "mildly decreased").

I’m running a low-grade fever constantly: it hits 99.5°F, though not every single day, but today it stuck at 99.5°F. And then there's this pain in my legs.

Since my white blood cell count is normal, the doctor is naturally refusing to prescribe antibiotics. I won't have the ultrasound results for my kidneys and bladder for another 10 days or so.
My March 19th scan showed visible conglomerate reflections in both kidneys, but no dilation in the renal system (and my urine labs just came back clean).

What I'm dealing with right now might just be a common cold since I'm slightly hoarse, my nose is a bit stuffy, and my throat feels irritated. But it turns out I might have picked up a virus because of the underlying inflammation (though again, the doctor insists a CRP of 15 is nothing).😵

Is it actually possible to develop some kind of kidney infection from stones? Around the 1st, I felt pressure in my bladder and thought I had successfully passed a stone, but after a few days of relief, here we go again: this relentless pain in my right kidney and lower back. It’s driving me absolutely insane. It feels like a full-blown renal colic because when the pain peaks, I can't even cross my legs or lift them onto the bed.

I should probably mention that at the end of April, I went through an incredibly stressful situation. I didn't eat all day and basically froze in the afternoon despite the spring weather. I even had those sharp, stabbing pains in my head amidst the tension in my cervical spine, which is another issue I struggle with.

Yes, but in that scenario, the entire clinical picture would look much more severe than what you're describing. It seems far more likely that these are two completely separate issues: kidney stones and a mild virus that has absolutely nothing to do with the stones.

They could be elevated because of her. But then again, they don't necessarily have to be. Honestly, Felix the Cat is a much better conversationalist on this topic.

At the end of the day, lab results aren't enough. What you actually need is a top-tier clinician who lives and breathes migraines, paired with someone who truly understands fibromyalgia and/or Chronic Fatigue Syndrome. When you're dealing with migraines coupled with vertigo, you could be looking at vestibular migraines—it’s entirely possible those two issues are linked. Then there's the fibromyalgia, which would account for both the chronic fatigue and those vascular symptoms, like the blue tint in your lips and nails. You essentially have two distinct issues requiring two different specialists: a neurologist and a rheumatologist. It's high time to move past the diagnostic phase and actually start some kind of treatment. But finding two specialists in the US who actually know what they're doing? Well, that's a whole other headache.

steelrider3 said:Could this actually be due to brain metastases?

Yes.

steelrider3 said:If anyone here has dealt with something similar, what kind of outcome should we realistically expect?

Look, when a tumor has already spread like this throughout the entire body, you have to face reality. In medical slang terms? Expect a total Cancel Christmas.

Exactly.

“The value of the QRS complex,” what an interesting way to put it. Even if—by some miracle—the QRS complex width was sitting at a whopping 200 ms, it wouldn’t mean a damn thing. Sure, a complete Right Bundle Branch Block (RBBB) is something you have to note down, but honestly? It carries virtually zero clinical significance. Not even when heart function is completely compromised.

You were probably just dehydrated (internally) when they drew your blood, which would explain why your creatinine and GFR levels look the way they do. This kind of thing happens all the time, and honestly, there’s absolutely no reason to panic about it.

George Johnson3 said:... so what is it in the end? Some kind of cancer, inflammation... now we just don't know anything anymore 🤔

This PET-CT report falls squarely into that category that certain clinicians—at least some of them—call "beating around the bush" or "it’s colder than it looks." There is a massive amount of text here, yet absolutely nothing definitive. Those spicules? They are certainly suspicious for something malignant, but if you actually trust the biopsy, then all those doubts have been wiped away. A localized inflammation—which is what the biopsy supposedly indicates regarding this issue—could definitely look exactly like what was described, but it won't just sit there forever. At this point, the only reasonable recommendation is to schedule another low-dose chest CT in about 3 to 6 months. And then, we just have to pray that whoever reads it actually knows what they're looking at. They say hope dies last, I suppose.

Someone on Google who apparently did their PhD in Germany—because over there, they slap that "Dr. med." title right in front of a doctor's name—what can you even say to that besides Aldar, bin begeistert..

Jokes aside, I don't deal with AL amyloidosis all that often. When it comes to ATTR, or the "wild type," the diagnosis is practically a given once certain markers hit, but even though ATTR seems to pop up more frequently than people realize, AL isn't exactly common either. Honestly, the current probability of you actually having that specific type is incredibly low, so if I were in your shoes, I wouldn't be losing any sleep over it. Even if some self-proclaimed "Dr. med." was pointing fingers at it.

Aha. And let me guess—was that advice coming straight from Dr. Google or Dr. Yahoo?

So, you're saying amyloidosis. Which specific type are we talking about here? There are actually several different kinds, though four of them are the most common. And let's be real—everyone knows that "cherry on top" factor is way more critical than macroglossia. So, cut to the chase: is there a cherry on the cake or not?

The only diagnostic step you actually need to take here—to figure out how massive this effusion really is—is an abdominal ultrasound. That’s it. Nothing more. And honestly? Any rookie could handle that without breaking a sweat.