Posts by shadowwalker11

Maria Fisher46 said:Look,

this one is actually a bit more complicated. See, the whole point of testing Anna was to confirm or rule out autoimmune hepatitis. You can see mononuclear infiltration in the portal areas with autoimmune hepatitis—especially if it’s a lymphoplasmacytic infiltrate. Even a titer lower than 1:100 could be significant here, even though you usually see 1:160 or higher. Depending on what your doctor thinks, they can always ask the lab to re-run the test even at such low levels.

Hey Felix the Cat,

Sorry to bug you again. I just had a second liver biopsy done, so I was hoping you could weigh in.

The tissue cylinder is 1.7 cm long with up to 17 portal fields per section. The histological architecture looks normal. There are a few lymphocytes found in some of the portal areas. No piecemeal necrosis or confluent bridging necrosis. Prussian blue staining showed no hemosiderin. No fat accumulation in the hepatocytes either.

Tissue sample length 0.8 cm, dry tissue copper level is 128.6 ug/g s.t.
(<50 is normal, >90 is pathological, >250 is Wilson's Disease).

My doctor is insisting everything is fine—claims the pain is coming from somewhere else and not my liver. They want to repeat the autoimmune antibody tests, ceruloplasmin, blood copper and iron, plus an endoscopy and colonoscopy.

Honestly, I'm losing my mind over all this. Everything feels like it's getting worse, and the mental toll is just brutal.

Sean Barrett35 said:Any ophthalmologist could spot that in two seconds—it's just the waiting lists that are the real nightmare.

Thanks for the reply, but if any eye doctor could actually see it in two seconds, I wouldn't be out here asking for recommendations, would I?

1. The doctor doesn't even see them. He just Googles images and compares them to my eyes. He calls over a resident to show him this supposed Mittendorf dot I have, the resident sees rings, then the doctor writes on the report that there are no rings. Makes sense, right? Not.

2. The optometrist sees them, though they claims they don't form a complete circle.

3. Another doctor writes on my chart that there are no rings, all while commenting that in his 30 years of practice, he’s seen them twice before and they’re usually thick, 2mm, and deep brown. He’s never seen a Mittendorf dot in my eye, and I’ve been his regular patient for over 10 years.

I won't even get started on how many doctors recently gave me a "perfectly normal" abdominal ultrasound, only for an MRI to show massive hepatomegaly that definitely didn't just pop up in three days.

Does anyone have a solid ophthalmologist recommendation in NYC who actually knows their way around Kayser-Fleischer rings? Looking for either Medicare or private options.

Sent from my Samsung using Reddit

Maybe this isn't even the right thread for this, but I have no clue where else to put it.

How much weight can I actually give a nurse telling me over the phone that a pathology biopsy came back clean? Like, do they actually tell patients the truth when things look bad, or is it all just "everything's fine" until the doctor calls?

Hey,

Thanks for the reply. My hepatologist said the ANA isn't really a big deal since the LKM-1 came back negative and the SLA-LP is just a 1 (ref. Guess I’ll just have to sit tight and wait for the biopsy results to see what's actually going on.

Liver and spleen are both enlarged. The only things out of whack are low ceruloplasmin and copper in the blood, plus low iron and ferritin. Just waiting on the Gaucher results now and an appointment for a new liver biopsy—the first one showed mononuclear infiltrate in the portal areas.

Nicholas Myers, since you're hanging around anyway, what's the deal with this ANA result?

result: speckled

Unit: titer

Ref.range: <1:100?

The lab work was done at Johns Hopkins Hospital.

fadedbear92 said:Ugh, this sounds super weird coming from her—seriously, she’s the reason I finally got out from under those constant gallbladder attacks. After her scan, I went straight to Vinogradski to get it surgically removed.

Have you seen her lately?

Did you pay out of pocket for the MRI? How much did that run ya? Thanks!

About 11 months ago.

The MRI was $1,150. They didn't need contrast, but if you want it, that costs extra $133.

fadedbear92 said:Dr. Tarle found gallbladder stones that had been killing me for like ten years—attacks, one hospital stay, the whole deal—while those private clinics couldn't see a thing on their ultrasounds.

The place has top-tier gear; I was just there for an abdominal ultrasound recently.

http://ultrasound-tarle.com/

Personally, I wouldn't recommend Tarle. She wrote on my report that my liver was normal size. Then two weeks later, I get an MRI and the doctor practically loses it when he sees how huge my liver actually is—not like it grew that much in just two weeks, right?

And honestly, after all the private and non-private ultrasounds I did before that MRI, I don't have anyone else to recommend either.

Can someone break down what this ANA finding actually means?
result: speckled
Unit: titer
Ref. interval: <1:100?

Is this supposed to be a positive or negative result?

Thomas Perez5 said:near Sisak

In NYC, they actually run ultrasounds at some of the local clinics—I managed to snag an appointment within three weeks once. But if you're looking at major hospitals for a gastric ultrasound, you're looking at a 2-3 month wait, easy. So, if they don't have ultrasound services at a clinic in Sisak, maybe you could just get a travel voucher to come down to NYC?

Thomas Perez5 said:Just wanted to brag—finally scored an abdominal ultrasound appointment (dealing with gallbladder issues and some polyps). Date is set for September 4th, 2018.

Where on earth did you snag that appointment?!

velvetmoose9 said:Hmm, maybe see a neurologist instead? 🤔

I mean, I’d consider it, but honestly, that’s the least of my worries right now—gotta get this liver situation under control first.

velvetmoose9 said:Is it Ranko or Rajko? 😒

J.
It's Rajko.

Honestly, my brain is turning to mush lately—can't even get my spelling or speech straight half the time.

Olivia Gomez67 said:If you're near the Suburban neighborhood, Dr. Davor Radić is definitely worth checking out... super thorough and reliable.

Thanks—we actually traded a few emails recently and I was really hoping to snag an appointment with him, but turns out I'll be seeing Dr. Ranko Ostojić instead.

Anyone got a solid recommendation for a hepatologist over in the Suburban neighborhood or near Merkur?

Hey,

Can someone help me make sense of this liver pathology report?

Liver tissue cylinder 1.3 cm; histological structure of hepatic parenchyma is preserved. Analysis shows 6 portal spaces, one of which is widened by increased connective tissue—all infiltrated with mononuclear cells. The limiting lamina is intact. Histological and histochemical staining (Mallory, Gomori, PAS, PAS-D, Rhodanine, Prussian blue, Schmorl) shows zone 3 pericentric hepatocytes with positive lipofuscin pigment; all other pigments are negative. Bile ducts are lined with regular epithelium, no stasis, no damage found. Hemosiderin and copper stains are negative.

Female, 35, enlarged liver. Viral hepatitis markers came back negative, and autoantibodies for autoimmune hepatitis were also negative.