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Theacat · 09-08-2004, 02:19 PM

My boyfriend has recently been diagnosed with chronic sarcoidosis. He has scarring of the lungs and is on steroids but seeing little improvement.

Does anyone here have sarcoidosis? I'd be really interested to hear how you are coping with it.

Thanks

alicon · 11-21-2004, 06:08 PM

I've got it. It's been nice to me so far though, the doctor hasn't had to put me on steroids, yet. A couple of years before I got diagnosed I had a problem where it felt like some guy was behind me with one of those rifles with a bayonet on it sticking me in the back with it-- not fun. When he comes back then I'll know that it's time for the steroids. You can get all kinds of information on the net about sarcoidosis, but some of it conflicts with other stuff. There is a theory about vitamin D and sun exposure making it worse, trying it couldn't hurt, right?

sugzey$ · 01-02-2005, 05:16 AM

Quote:

Originally Posted by alicon

I've got it. It's been nice to me so far though, the doctor hasn't had to put me on steroids, yet. A couple of years before I got diagnosed I had a problem where it felt like some guy was behind me with one of those rifles with a bayonet on it sticking me in the back with it-- not fun. When he comes back then I'll know that it's time for the steroids. You can get all kinds of information on the net about sarcoidosis, but some of it conflicts with other stuff. There is a theory about vitamin D and sun exposure making it worse, trying it couldn't hurt, right?

Alicon, I have Bronchiectasis and Mycobacterium Avium Complex in my lungs. Once in awhile I have what I call the hardest hurt you can imagine in the center of my chest. I feel like I might die while it is hurting. I have had it to last probably 15 minutes or more. Drs. have no explanation. I wonder if it is sarcoidosis. I have a cousin with sarcoidosis. I think they are beginning to think it might be in the genes from birth.

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