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Old 10-29-2007, 11:34 PM   #1
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could i have sarcoidosis

Hi I've been on here but I was posting on lymphoma board. I recently had a lymph node biopsy done of my neck that came back as dense fibrous scar tissue. I am happy I don't have cancer yet I'm still upset cause I still don't know what's been going on with me. If you care to read more here are my symptoms I've had for about 4 years now: painless swollen lymph nodes in my neck, extreme fatigue, chest pain/tightness, headaches, sweatiness, upper back pain, persistent cough(I'm also a smoker so it's really difficult to know if it's from that I'm 24 and I've smoked for 6 years now), occasional shortness of breath, occasional joint pain, frequent urination(it's really cloudy which I find odd), and really lumpy breasts( which might be fibrocystic breast tissue but it's not related to my periods cause it stays; in fact I've noticed more little lumps) Recently I had a chest ct and neck ct which showed nothing abnormal except a "cyst" on my liver. So I am so confused and frustrated because I know I am not crazy but I think people around are thinking that I am a hypochondriac. But I'm sorry you don't just imagine cloudy urine and hard swollen lymph nodes and lumpy breasts.
These are blood tests that I have had done : TSH, ESR, CBC, Lyme, ANA, reumatoid factor, hep., HIV, and I think there are a few more all are normal And I've also been to a cardiologist who ruled out any heart related problems( ECHO, EKG's, MRI of the heart, stress test all normal)and a neurologist and a reumatologist who haven't found anything.
I know now from researching online that I probably should have an ACE and vitamin D and calcium tests done. So I am just wondering if anyone got diagnosed through a lymph node biopsy that was similar to my description of a dense fibrous scar tissue. Does that even have any significance or is it nothing?
Thanks lisa

 
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Old 11-03-2007, 12:56 AM   #2
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Re: could i have sarcoidosis

Hi - of course anything is possible if our immune system is weakend. I have alot of your sysmptoms and was diagnosed w/lung sarcoidosis after many many chest x-rays and ultimately a lung biopsy was done on some of the tissue within my pulmonary lung nodules. I did have the ace test done but my particular sarcoid doesn't affect my ace test. but i do believe i had a very high calcium level. but that i'm not sure about. But the ace test cannot always be used as a determining factor. it took 2 yrs to diagnose me because my ace test kept coming back normal so they just wanted to keep an eye on the pulmonary lung nodules until they progressively got worse. THEN FINALLY THE LUNG BIOPSY. AND FINALLY A DIAGNOSIS... WHICH REALLY DOESN'T AMOUNT TO NOTHING BECAUSE DR.S JUST DON'T KNOW ENOUGH ABOUT IT TO OFFER A COURSE OF ACTION. THE DISEASE HAS A MIND OF ITSELF SO ITS OFTEN HARD TO KEEP CONTROL OF. At least thats been my experience. Hope all turns out well for you

thanks,
susan

 
Old 11-24-2007, 11:58 AM   #3
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Re: could i have sarcoidosis

Lisa, the blood work (ACE, calcium level, etc.) can indicate sarc, but isn't a definite diagnosis. It sounds like you've had a lot of heart workups, but nothing for the lungs? Had a chest xray lately? It's a good place to start if you think your breathing is labored and you get chest pain (especially along the sternum).

The lymph node biopsy doesn't sound like sarc, which would produce granulomas in there. I think your myriad of symptoms could have more than one cause.

I hope you can get some answers, but I'm finding that a diagnosis and a course of treatment that really makes a difference are entirely separate things. I'm now an "official" sarc patient, and they are still trying to find out everything that is messed up with me.
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Nancy D-ACDF 6/2/02, bladder suspension 12/06, sarcoidosis 10/07, TKR 9/3/13

 
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