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Old 10-06-2007, 08:18 AM   #1
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Nanner HB UserNanner HB User
Sound like sarcoidosis?

First, let me say hello. I've been a member on a couple of other boards in the past, but it looks like this will be my home for a while.

In early September I began having tremendous pain on the outer edge of both feet. Since I had a routine checkup with my doc, she prescribed a predisone dose pack as I was heading out of the country on vacation. At the time I had occasional pain at the bottom of my left rib cage, but didn't mention it.

While on vacation, once my dose pack ended, my feet and ankles swelled and I could barely put on my shoes or walk. I have a history of arthritis, and thought that was the culprit. I also developed pain in the sternum area, my throat felt raw all the way to the lungs, and breathing was hard. We were in the mountains, which again made me discount any other thing as a problem.

We went to Colorado, again in the mountains, and I was still swollen. Since we had another flight coming, I ended up in ER in the booming metropolis of Salida on a Sunday. Another Medrol dose pack prescribed, and by flight on Thursday the swelling was down but the chest pain continued.

Flash forward...now I've had an abnormal chest xray and CT scan showing enlarged lymph nodes in both lungs. Pain below left ribs continues, though the chest pain seems somewhat less the past few days (could be because we bumped up the reflux meds, just in case that was the problem). I see the pulmonologist on Thursday and expect a biopsy.

So, are these symptoms fairly classic? My feet are doing well now, but what might I expect as far as recurrence? My throat/voice still are raspy, it still hurts some but is a lot better than 3 weeks ago.

My internet surfing led me to an educated guess on what's happening to me. If I am right, any suggestions for management, etc. welcome!
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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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Old 10-07-2007, 03:31 PM   #2
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Re: Sound like sarcoidosis?

I was recently diagnosed with Sarcoidosis and I believe the only thing they can do is give you prednisone. I had the biopsy because they thought it was cancer. Two nodules had lite up on PET scan. Before they do a biopsy have the test for sarcoid and/or a PET scan. They had to do a lobectomy on me. It's not as easy as a needle biopsy. Hope this helped some. I didn't have the swelling in feet but I have heard it can be from sarcoid. Good luck!
Let me know how you make out at the doctors.

Linda

 
Old 10-09-2007, 04:51 PM   #3
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Nanner HB UserNanner HB User
Re: Sound like sarcoidosis?

Thanks for the reply. I had the first meeting with the pulmonologist today, and he wants a PET/CT test next. Then I'll meet with him again. He also indicated that he will be doing a biopsy after the PET, which doesn't sound like he thought going without it was an option.

He prescribed two different inhalers. Asmanex for daily use, and Proventil if I have any real emergencies where I can't get enough breath. At least at this point I doubt I'll crack the latter open.

I have to admit I'm a bit scared. The doc indicated that right now he thinks it is sarcoidosis, and not lymphoma. I don't think either diagnosis is great news, but I would certainly prefer not to hear cancer.

This is the thanks I get for never smoking, and bicycling over 1000 miles again this year. I wish I had a clue what caused this!
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Nancy D-ACDF 6/2/02, bladder suspension 12/06, sarcoidosis 10/07, TKR 9/3/13

Last edited by Nanner; 10-09-2007 at 04:54 PM.

 
Old 10-10-2007, 07:46 AM   #4
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Lisaraye47 HB User
Re: Sound like sarcoidosis?

Hello Nanner, I was diagnose with sarcoids in 1998, and yes you seem to be experiencing various symptons of sarcoids. But ****** Pulmonary Sarcoidosis and you will get alot of information. Also Amercian Lung Association has information on Sarcoids. If you have specfic questions to ask me I'll be more than happy to answer, so feel free to write back. I didn't go into many details because you are consulting with doctors right now and that can be confusing getting so many different opinions. I do know the biopsy is the most effective way to diagnose. Take care and I'll check back later, have a wonderful day!

 
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