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Old 02-17-2013, 01:03 AM   #1
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Lung nodules, sarc or sjogrens?

I'm not sure if anyone can provide any insight into whether I might have sarcodisosis? Last year I was having bad chest pain and chest tightness, but it didn't seem like asthma, instead of wheezing when breathing in, if I exhaled, it made this real sick sound that I'm not sure how to describe. Albuterol barely worked. I ended up going to the ER, getting some prednisone, which at least stabilized my ability to breath, the chest tightness and pain was really bad.

ER also did a CT which showed bilar lymphadonopathy, both lesions were 2cm in diameter. They weren't sure of what of make of it. Eventually referred to pulmonologist, and after some delays, maybe 3 months later, a PET/CT scan, which shows the nodules are lighting up. After some more delays, maybe 3 months further along, he does a biopsy. By this point my breathing problems had started to go away, but I wanted a accurate diagnosis if possible, but once my doc got in there, he decided not to biopsy, since the lesions had shrunk since the PET scan, and I was getting better. He did a wash/ aspiration, which didn't show anything. He said he couldn't give me a definite answer, and is hard to communicate with or get a hold of (he's really hyperactive, I think probably overworked).

So really all good news. Except that for close to 6 months I couldn't walk around the block without gasping for breath, had chest pain, and my life got really screwed up. And also this had happened before. Two years earlier I had had similar breathing problems, although no chest xray, they kept saying asthma. But also diagnosed with MS around this time, due to brain mri, and neuro problems, and then treated with lots of steroids for the MS,which cleared up the breathing problems and neuro problems, although later was told by 3 different doctors that the MS diagnosis was definitely wrong. And 5 years earlier, and I ended up on prednisone for two months, having similar lung problems, and had a chest xray showing lung lesions (primary care doctor said it was asthma + bronchiolitis, but didn't do any tests). All of these were preceded by dry cough, joint pains, and general fatigue for about 6 months, and I had this skin rash during two of these episodes.

Shortly before the lung problems got real bad, I got diagnosed with sjogrens syndrome, based on some blood tests, and dry mouth and eyes, and some intermittent vision problems. But I never got a answer for the neuro problems (brain lesions, peripheral nerve damage, gait problems, spasticity, memory problems, blurry vision, concentration problems), which I was told were not sjogrens related. Also I have had some really severe, horrendous back pain during some of these periods. I have chronic back pain, but this was like 10x what I normally have.

So I'm hoping someone with knowledge of sarcoidosis can read this and let me know if this sounds like sarc is a possibility? My rheumatologist mentioned the lung nodules might be sjogren's related, but I wonder if it was/is actually sarc, since I read this can also cause dry eyes and dry mouth problems, and the sjogren's blood test is not 100%...although also sometimes this stuff overlaps too. The reason I am worrying again, is that I am having some of the chest pain, cough, and tightness that I did before, on a daily basis, like before it got real bad and I ended up in the ER, and I read sarc can be cyclical like that, and honestly from reading about it, sarc/neurosarc would make more sense than sjogrens...based on reading about it and what I've been through...

Last edited by joggies476; 02-17-2013 at 01:06 AM.

 
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Old 02-18-2013, 05:49 AM   #2
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Re: Lung nodules, sarc or sjogrens?

Have you been checked for lymphoma, they go up and down, if there lighting up that i thought was lymphoma, have you had bone marrow biopsy. Hope this helps, dont want to scare you, but know some one thats been down that track of doctors to busy uming and areing and boom. Specialist after 6 years finds lymphoma, after sjrogrens, thyroid problems, anemia, low platelets, up and down they went. so get it checked out, rule it out. Also lymphoma can cause a cough, if nodes are swollen .

Last edited by estelle454; 02-18-2013 at 05:50 AM.

 
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Old 02-21-2013, 01:09 PM   #3
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Re: Lung nodules, sarc or sjogrens?

Lymphoma was my biggest fear at the time. My blood work has been off for a while, besides the low platelets, I also have low white blood cells (neutrophils). If the doc had followed through with the biopsy during the bronchoscopy (basically, they put a little camera and mechanical arm/scope into my lungs), I'd know for sure, but for now just have to go with what the pulmonologist said, basically not to worry, since the swelling had lessened.

But yeah could be lymphoma in its early stages, maybe related to the sjogrens (50x increased risk factor for lymphoma). But hopefully, its not...

 
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Old 02-21-2013, 01:10 PM   #4
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Re: Lung nodules, sarc or sjogrens?

Lymphoma was my biggest fear at the time. My blood work has been off for a while, besides the low platelets, I also have low white blood cells (neutrophils). If the doc had followed through with the biopsy during the bronchoscopy (basically, they put a little camera and mechanical arm/scope into my lungs), I'd know for sure, but for now just have to go with what the pulmonologist said, basically not to worry, since the swelling had lessened.

But yeah could be lymphoma in its early stages, maybe related to the sjogrens (50x increased risk factor for lymphoma). But hopefully, its not...

 
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Old 03-03-2013, 05:49 PM   #5
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Re: Lung nodules, sarc or sjogrens?

It sounds like sarcoidosis is likely, because of the way it responds to steroids, disappears, then comes back again. Sarcoidosis affects men more than women, typically starts with a dry cough, shortness of breath, chest pain, sometimes fever. Bilateral hilar adenopathy is characteristic as well as lung nodules. Joint pains, particularly bilateral ankle pain occurs and the neuro signs and skin rashes too. Here's some suggestions: Get a chest xray or better yet a CT scan of chest now, and request a serum ACE level (angiotensin converting enzyme). It is usually, but not always high in sarcoid. Then if a rash appears, no matter how slight, get a skin biopsy at derm office. That may give you the diagnosis. If the rash doesn't appear, another bronchoscopy may be needed to biopsy a nodule or a hilar node. I would see a rheumatologist, as well as pulmonolgist,as sarcoid is under that specialty. Of course you should have the general blood tests of CBC, chemistry, sed rate and CRP (will most likely be high), and if no infection shows up, should be put on steroids again. Sarcoid is not common and many Drs don't know much about it, so you may have to be your own advocate.

Last edited by ladybud; 03-03-2013 at 05:51 PM. Reason: added phrase

 
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Old 03-03-2013, 05:59 PM   #6
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Re: Lung nodules, sarc or sjogrens?

Systemic lupus can cause some of these symptoms like the low platelets and low WBC, often caused by low lymphocytes, but generally does not cause MS looking lesions on brain MRI. An ANA, RA and host of other antibodies can be run by the rheum to check the connective tissue disease angle. I think a biopsy and serum ACE will give you the answers you need. If you can do it, consider going to the Mayo clinic, where tests get done in a timely manner and all needed specialists work on your case at the same time and communicate with each other. (Novel idea, huh?)

 
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Old 03-06-2013, 08:44 AM   #7
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Re: Lung nodules, sarc or sjogrens?

Just a question for you- since you live in California, has Valley fever, a fungal lung infection been ruled out?

 
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Old 03-14-2013, 09:56 AM   #8
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Re: Lung nodules, sarc or sjogrens?

Thanks ladybug for your responses. I've been struggling with some cushings side effects from my asthma inhaler, also lost my insurance, and had to switch doctors b/c my former pcp was being an idiot basically.

I had thought I could have SLE a while back, but the rheumatologist ruled it out, based on my ANA pattern and some other stuff I think. I'm going to ask my new doctor about sarc, but it will probably have to wait till next month. He was thinking its asthma and allergy related, increased my asthma inhaler dosage, and it helped, but I can't deal with the side effects. I'm supposed to get a bone scan to figuire out why I have bone pain, and some blood tests, and vitamin D test. I know vit D is high in sarc but I'm not sure if this is why he is checking it.

I think valley fever was ruled out, I think from the bronchoscopy, when the pulmonologist did the culture from the lung aspirate. Although I did have candida/ thrush type problems all of last year also, but I think the fluconazole finally killed it off, when they increased the dosage.

 
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Old 03-14-2013, 12:50 PM   #9
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Re: Lung nodules, sarc or sjogrens?

Vit D is frequently low in SLE, so that result will be interesting. Low Vit D can cause bone pain and that responds to treatment. Please keep us posted. It sounds like you had a positive ANA in past, as they don't do "pattern" identification on negatives. I would try to get those records for your new Dr. and yourself.

 
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