Update on finding a diagnosis..

Hi,

unfortunately, having the biopsy isn't always sufficient to diagnose a condition. While it can give a clear diagnosis in some cases, there are situations in which a biopsy doesn't help too much. Whenever they're doing a biopsy, the lab technicians will look for whatever doctors tell them to look. This means they won't look for cancers or infections, if the doctor doesn't tell them so.

In my case, they looked for everything, except for TB. Guess what? They have found some bacteria for which I received a few treatments. But in the end, TB almost killed me...Luckily, my doctor realized that something was wrong when, despite all the antibiotics I was getting, my health conditions got a lot worse.

Now, it's quite strange you have no symptoms. However, if sarcoidosis (since there is lung and lymph node involvement, it could be sarcoidosis) is in an incipient stage, it can sometimes go completely unnoticed and that's because some patients have no symptoms at all; no cough, no fever, no...,no..

The fact that D-dimmer test came out positive might or might not be related to the things they saw on the x-ray.

After being in and out the hospital over the past 10 years, for different conditions, I can tell you that no doctor can be 100 percent sure, especially when they are trying to diagnose a strange condition.

For instance, I was first diagnosed with a heart condition, then they said it was idiopathic fibrosis and I could die in 5 years if I was not going to have lung transplantation (I was very close to having the lung transplantation, though they're now saying it's good I didn't have it because, as things turned out, I suffer from a completely different condition than the one they thought I had), then that it was pneumonia, then again fibrosis and finally, they said it was sarcoidosis. It took four looong, horrible years to finally get my diagnosis. And to tell you the truth, they're now 100 percent sure I have sarcoidosis, but I'm not. I guess I have, but how can I be sure if I've had so many different diagnoses based on the same symptoms over the years? 

I hope you'll get your diagnosis soon and it's not something serious!! Fingers crossed and all the best! 

It is a closed page but you will be excepted pretty quickly   

Over 6000 people on there with Sarcoids.  

First off I am granny I went to a Speacialist in Denver he is good just him looking at x-rays and that he seen socordis on lungs and liver he's treating it with a steroid inhaler I ask about biopsy he said be waste of time he said it really wouldn't tell you he told you can't everything on it boy was he right he did test on my heart and found out I have a right bundle blockage so I go see heart dr boy was I shock it heredity. He check my heart it not On it I l go back 6 months but if go drs here he wants all the information so he can keep tabs and help my drs and blood work like said he everybody around goes to him I hope have good luck

What ever the results you get after the biopsy that must be your first priority.

From my personal experience,

The test is one of a number of tests to confirm sarcoidosis. I had one after first having problems with my eyes (uveitis) then having a chest X-ray (sarcoidosis), then blood tests (elevated calcium levels) a further indication of sarcoidosis, then a lung biopsy (sarcoidosis). These all make up the overall diagnosis.

I was then given heavy doses of prednisolone with a gradual tapering off regime.

This is the most common treatment, although there are others.

Be prepared for the side effects.

Take care

Hi there, I was diagnosed in March this year with pulmonary sarcoidosis. I had been diagnosed with pleurisy and pneumonia in December 2015 which didn't improve with antibiotics. I had a repeat cxr to see if pneumonia was gone. They didn't like the look of the xray so had to have a ct lung with contrast. This showed lots of nodules in both bases and a nodule on my thyroid. Had u/s thyroid with needle biopsy: result- negative, benign. Ct lung biopsy: result- inconclusive, necrotic granulomas. Had PET scan to check for sarcoidosis anywhere else: result- lungs only. Finally, a bronchoscopy diagnosed lung sarcoidosis. Their initial thoughts were pulmonary lymphoma. If they think its in your lungs ask for a bronchoscopy. Blood tests can indicate it, serum ace levels but mine weren't that high. Hope you get a diagnosis soon. All the best.

Polly

Hi. Thanks everyone for your replies.

I was under the impression that a bronchoscopy was similar to the surgical biopsy? My doctor told me he could do a bronchoscopy but the surgeon will do the same thing at first but if the samples (lung tissue and lymph node sample) come back negative, the surgeon will be capable of taking a whole lymph node. I haven't met with the surgeon yet but since you guys brought that to my attention I'll definitely bring it up once I meet him. My doctor is still under the thought of this being simply an infection and so I'm under the impression he'll be testing for infections and also cancer. Especially since I told him I fear it being cancer, or anything that isn't curable or treatable for that matter. Ah! I forgot about my ACE levels. They were checked and they were slightly elevated. Another palm-face smack.

Mag -- A friend of mine brought up the idea of this being TB. But I keep coming back with the response of, "But.. I have no symptoms!" I've never had TB but I would assume it's not a fun infection. I've thought that myself -- That it could be sarcoidosis with no symptoms or if I do have symptoms, they're not noticeable. Like just today, we went to an amusement park and my boyfriend and I were having our son race us. Our son lost, so for the fun of it, I scooped his 36lbs self up and ran up a small hill and WE beat his dad. It only took a few deep breaths to catch my breath and it wasn't like I was gasping for air. The positive d-dimer is what made them push for the CT I believe. They did the xray and d-dimer at the same time and once the bloodwork came back positive they needed to do a CT (with contrast) to check for a pulmonary embolism. But it showed "pneumonia and slightly enlarged lymph nodes," instead of the embolism. I remember thinking I was in the clear until the nurse goes, "Oh you have a positive D-Dimer result and we need to do an xray." I screamed obscenities in my head!

Zss -- You brought up something that I never mentioned in my first post. Calcium levels. When I went to the ER for that one striking chest pain, they did so much blood work and one checked my calcium levels. They were actually low. Which my doctor said, "Well, that's not good being that you're a woman! However, higher calcium levels are seen in patients with sarcoidosis and yours are on the low side." And I eat way too many TUMS so I actually expected them to be high ha.   All my test results, as of right now, are coming back with them thinking infection, specifically pneumonia. And I'm like, "Then where are my pneumonia symptoms??" So.. I'm not thinking it's pneumonia. But hey, I guess everything can't be textbook.

Only time will tell! I just know I never wanted to work in the medical field for the mere reason that I'm in it as a patient too much. I've already had 5 surgeries starting at 21 years old (I'm 34 now), too many medical tests and hiccups along the way. I needed a medical break and I don't see that happening anytime soon. Grr.

*Craniotomy

21 years old

*Laparoscopic gallbladder removal

21 years old

*Cyst removal in my hand

27 years old

*C-section

31 years old

*Laparoscopic left fallopian tube removal

33 years old

*Biopsy?

34 years old.

I had extreme liver pain and lung pain.  I had CT Scan that showed what they thought was metastatic cancer masses in multiple organs.  I was told I probably had terminal cancer all over.  They immediately did an MRI and then a PET Scan.  They wanted to do a liver biopsy but the liver is way to vulnerable swollen and full of masses.  They decided to do a lung and lymph node biopsy.  All went well with it and within 1 week it came back positive for protein stains and confirmed Sarcoidosis not cancer.  You need to know what it is so you can get treated.  I have been on only ACTHAR Gel HP due to my liver issues.  I have taken it now for 6 months and they are still deciding if I am Stage 3 or 4.  I had a new CT Scan and the lymph nodes showed improvement and the rest at least hasn't progressed and the doctors are happy with that.  Please get a good lung surgeon to do biopsy and it will be okay.  You need to find out what you need to fight, don't wait too long.  I did mine right away and am happy I did.