Update on finding a diagnosis..

Posted , 8 users are following.

Quick bio. 34, f, smoker (unfortunately), no symptoms. Ok!

So I ended up in the ER maybe 4 or so months ago because I had a striking chest paim that lasted a couple seconds. I don't put that kind of stuff off so to the ER I went. Long story short. EKG - neg. D-Dimer test - positive. Onto an xray because of the positive d dimer. Xray - positive. It came back showing "vague opacity at the left lung base." The tech assumed pneumonia. MRI - positive. Results:

There is consolidation at the left lung base with dependent atelectatic changes noted the finding may be consistent with pneumonia. There is mild prominence of prevascular lymph nodes and mildly prominent bilateral hilar lymph nodes and subcarinal lymph node this may be reactive given the findings at the left lung base consistent with pneumonia.

Saw a pulmonologist and he felt it was following a pattern of some infection. Bring on the antibiotics!! 1 week ago i went to get another CT scan.Today I went back to my pulmonologist for the results. The more recent CT showed nothing got better but just a smidge worse. The patchy white consolidation got a bit less patchy and the lymph nodes are a "bit more predominent." However, it was said that the machine may not have been as clear as the previous scan. Maybe it never changed? Either way, it didn't get better!

I was given my options to find a diagnosis and i decided to go with the most aggressive procedure. One and done -- let's just get it over with! I'm getting the surgical biopsy sometime soon. I'd rather not waste time especially if this could be something like cancer or even a serious infection. Ah! I am a nervous wreck! I told my dr that I've been going crazy. Googling ANY possible diagnosis. Surprisingly, he says GOOD! That he thinks researching conditions and educating myself is never a bad thing. (Wow! Haha) So hopefully I find something out once I get the biopsy. Hes confused that I have no symptoms. So he questions what really is wrong. I've never had a fever, no shortness of breath, no cough, no fatigue (besides that i have a 3 year old that hates sleeping).. no symptoms! I've looked up stuff and I get more and more confused on what diagnosis I could have when I have no physical problems.

I have a question though. With this biopsy, do any of you know what theyre going to test for? Obviously they're going to check for cancers. But can they find infections too? They're taking lung tissue and a piece of a lymph node. If that comes back negative then they'll take a whole lymph node during the same procedure. I forgot to ask at the appt. but if it comes back negative altogether, do you think that'd be enough to diagnose my condition with sarcoidosis or would I possibly need further testing?

BTW. My case should have been in an episode of House. wink No symptoms but positive a xray and ct.. I bet even he'd think sarcoidosis. Haha!

(Gotta hae a sense of humor.)

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  • Posted

    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! 

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  • Posted

    Hi,  Ask these questions on the Facebook Page called SARCOIDOSIS

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

    Over 6000 people on there with Sarcoids.  

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  • Posted

    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

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  • Posted

    For your own sake, PLEASE STOP SMOKING.

    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

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  • Posted

    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

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  • Posted

    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! wink

    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. wink  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. sad

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    • Posted

      A few other ways to know if you have greater chances of Sarcoidosis is to have a Vitamin D test.  If you are extremely low in Vitamin D that is a sign.  I am caucasian and have very low VItamin D and am light sensitive.  It is also very prevalent within African Americans due to skin not being able to absorb Vitamin D as easily.  If caucasian, you can also have a blood dna test to see if you have a mutated DNA gene that is a double gene that is of Nordic descent.  
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  • Posted

    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.

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