6 posts shown.
brightgull95 said:Just ask an internist. For everything else, you really should sit down with the two doctors managing your case and get the specifics directly from them.
I really appreciate how thorough everyone has been with their answers. At this point, I think my best bet is to just talk to my rheumatologist. My heart ultrasound was actually done over at a private clinic, which was my first real encounter with a cardiologist—up until now, everything has been handled through my rheumatology team.
Thanks so much from the bottom of my heart.
brightgull95 said:Exactly. Both my primary doctor and the cardiologist who first identified the lymphedema are on the same page. Even though the puncture results came back clear, the rheumatologist is pushing hard for an actual excision of that node.
So, the rheumatologist is adamant about surgically removing the lymph node in the left groin, even though the puncture biopsy looked perfectly fine.
If I wanted to find a specialist specifically for lymphedema, what kind of medical sub-specialty should I be looking for?
brightgull95 said:You should really ask the two doctors you've seen about this directly. There's no way they just gave you verbal instructions without leaving some kind of paper trail or official recommendation somewhere.
Unfortunately, I can't get the image to load properly here.
The report notes heart enlargement.
The aorta looks normal in diameter, and both the pulmonary artery and the pulmonary valve are fine. The chambers of the heart are within normal width ranges.
There is mild concentric hypertrophy in the anterior and posterior walls of the left ventricle, measuring at 1.2cm. Contractility is normal, and both systolic and diastolic functions are performing as expected. No intracardiac masses were found.
There is bilateral swelling in the feet and distal lower legs, which looks like chronic lymphedema.
brightgull95 said:Honestly, you should probably run this by the two specialists you've been seeing. It’s highly unlikely they just gave you some verbal suggestions on the fly; there has to be some sort of written recommendation or clinical note regarding what needs to be done next.
My rheumatologist recommended I get a puncture of an inguinal lymph node and an echocardiogram.
The puncture was performed and the results came back normal, but during the echo, the cardiologist made a mention of the lymph node. I have a follow-up scheduled with my rheumatologist on May 29th.
Do you think I should bring up the lymphoedema specifically with the rheumatologist? I'm attaching the ultrasound report and my blood work here.
For about two months now, my lower legs have been swollen, and the swelling just won't budge, even after a full night's rest.
I ended up at the ER, where they told me I have pitting edema in both shins.
They ran a whole battery of tests—heart, kidneys, lungs, liver, blood work, urinalysis—and everything came back normal, except for one thing: my ACE levels are elevated.
Based on those results, I was referred to a rheumatologist who strongly suspects I have sarcoidosis.
I’ve already had CT scans of my chest and abdomen, which looked fine, and an ultrasound of my lymph nodes in my neck, groin, and armpits.
The ultrasound did pick up one enlarged lymph node in my groin, so they performed a puncture, but that biopsy came back clear.
Now, the rheumatologist thinks that to officially confirm the sarcoidosis, we need to actually excise that lymph node from my groin, because they suspect there might be granulomatous inflammation present.
While all this testing was going on, I started feeling tingling in my fingers—mostly on my left hand, but sometimes the right too—specifically the first three fingers (thumb, index, and middle). My rheumatologist prescribed some meds like Aleve 600 and ibuprofen 600, but the tingling actually got worse.
I also had an echocardiogram, which was perfectly fine, but my cardiologist mentioned that the swelling might actually be an issue with lymphadenopathy rather than sarcoidosis. Now I'm stuck in a bit of a loop. Should I go through with the surgery to remove the lymph node and follow the sarcoidosis diagnosis? The rheumatologist is 99% sure it's sarcoidosis but can't prove it without a pathological analysis, yet the cardiologist is suggesting I look closer at the lymph issues instead.
Thanks in advance.