It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Sarcoidosis Message Board

could i have sarcoidosis

Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 10-29-2007, 11:34 PM   #1
Junior Member
Join Date: Sep 2007
Location: Massachusetts
Posts: 26
desparado13 HB User
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

Sponsors Lightbulb
Old 11-03-2007, 12:56 AM   #2
Junior Member
Join Date: Apr 2003
Posts: 17
RaysMom HB User
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


Old 11-24-2007, 11:58 AM   #3
Join Date: Feb 2002
Location: Michigan
Posts: 319
Nanner HB UserNanner HB User
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.
Nancy D-ACDF 6/2/02, bladder suspension 12/06, sarcoidosis 10/07, TKR 9/3/13

Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
sarcoidosis and leg paralysis kckdottboi Sarcoidosis 8 07-21-2011 07:29 AM
could this be sarcoidosis? rmc20021 Sarcoidosis 2 10-16-2010 09:24 PM
Looking for people who have pain pumps implanted. Maddavis Pain Management 1 02-06-2009 09:44 PM
Sarcoidosis KellyinTX Sarcoidosis 19 01-31-2007 01:27 AM
SARCOIDOSIS/Am I dying?? LaurieCrochets Sarcoidosis 37 11-21-2006 04:19 PM
Sarcoidosis - self help groups? Anniebee Sarcoidosis 0 05-15-2005 05:31 AM
Anyone have Sarcoidosis? Theacat Sarcoidosis 2 01-02-2005 05:16 AM
Anyone else have sarcoidosis of the heart? MakeItStop Sarcoidosis 0 08-07-2002 05:29 PM
Neuro sarcoidosis Beverly Sarcoidosis 0 02-05-2001 05:54 PM

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 05:21 PM.

Site owned and operated by HealthBoards.comô
© 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!