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Old 01-20-2003, 07:59 PM   #1
Join Date: Jan 2003
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Riker1964 HB User
Post Sarcoidosis

Hello, I have recently been told by my pulmonologist that he thinks I have Sarcoidosis. I'm a 38 year old male caucasian, and after a routine chest x-ray, they saw something abnormal. I recv'd chest CT and I have 2.5 and 1.5 cm lymph nodes enlarged in the medastinal and hilar areas. I had a broncoscopy done, and the pulmonologist said my lungs and airways looked "textbook" perfect. Had 6 biopsies done, 1 in each lobe of each lung, plus a lavage. No Sarcoidosis or cance present in these biopsies. They now have me going in for a medianoscopy Friday, to pull out a lymph node and biopsy that. I asked my doc if it is sarcoid, will it turn to fibrosis and he said not in my case, and that they can treat sarcoid.

Anyone know what the likelihood of this being sarcoid is, if lung biopsies were negative? Only symptoms I have been presenting is trouble breathing, almost everyday lightheadedness/cobweb head, and sometimes sharp chest pains. I think the lightheadedness is sinus related as I have tons of allergies. But the breathing issues I have had for 3 years (mostly in fall to early winter) and no one has been able to tell me what that is from. They ruled out asthma though, with a methacholine challenge. The breathing issue is maddening sometimes.


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Old 02-20-2003, 07:00 PM   #2
Join Date: Feb 2003
Posts: 6
frightened HB User

Hi, I really don't have any answers for you. I've been hoping to talk w/someone else who has this. I am 36 F and was dx with sarcoid about 10yrs ago. In the beginning I was going to the Dr's every six months. The las time I went for this was about 2 years ago. I plan on making another apt soon to followup. I have never had any treatment or biopsy. I suffer from shortness of breath and cough so I have been on inhalers. I have also had alopecia. And I'm sure other things but I do not have much knowledge. The last time I was seen the dr said xrays looked fine. If you have any info please write back. Thnks and good luck.

Old 02-26-2003, 10:28 PM   #3
Senior Veteran
Join Date: Sep 2001
Location: Edmonton, AB, Canada
Posts: 2,459
wrin HB User

Probably not big -- xrays are notoriously hard to read, trust me, I've stared at a few in the last few weeks and wow, wow, wow, it's kind of like trying to make sense of instructional diagrams that were drawn in charcoal, smudged, and photocopied.

Old 03-30-2003, 01:29 PM   #4
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Join Date: Mar 2003
Location: ME, USA
Posts: 15
wowosmama HB User

There is a rare condition called Wegeners granulomatosis that you should be checked for, especially with the sinus problems that you're also having. Usually a rheumatologist deals with this, but ask your doctor because if that is what you have you need treatment.

Old 03-30-2003, 06:52 PM   #5
Join Date: Jan 2003
Posts: 50
Riker1964 HB User

I have been diagnosed with Sarcoidosis via Mediastinoscopy biopsy. Pulmonologist says I don't need follow ups. Not sure why, but I am seeking a second opinion because I have been told by people who have Sarcoid that it can spread.

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