Sarcoidosis Support Group

Sarcoidosis is an immune system disorder characterised by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected, however, granulomas most often appear in the lungs or the lymph nodes. Symptoms can occasionally appear suddenly but more often than not appear gradually.

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BuffyS 11/18/2011

Hi, I was diagnosed with MCTD and sarcoidosis in June of this year. All these months I've assumed the pain in my legs was from polymyositis, but now I'm wondering if it isn't the sarcoidosis. Bloodwork showed my ACE at 87, which I assume is why the rheumy diagnosed the sarcoid. I have one nodule in my shin over the place where I had a compound fracture 40 years ago, and that's the only obvious sarcoid-related skin issue. Chest x-rays showed no sarcoid.

Taking plaquinel and I still have a lot of pain, mostly in my legs. Terrible fatigue. I guess I'm just curious how many of you also have MCTD or something like that along with the sarcoid diagnosis.

deleted_user 11/22/2011

I've had Fibromyalgia for 15 years. I was recently diagnosed with Pulmonary Sarcoidosis. I've been reading that they commonly exist together.

deleted_user 11/27/2011

Hi pt523tm,
I'm so sorry for your new diagnosis of Pulmonary Sarc. You're reading paid off 4 u., but keep reading, there's lots more.

I learned a lot from WWW. Sarcoidosissupportgroup.com, and talking with a doctor familiar with the many phases of Sarc.

Keep searching, the more you know, the better you can educate your doctor.

deleted_user 12/12/2011

i have sarcoidosis with no lung invlovlement and what they call "saroid myositis" and "sarcoid arthritis" both are inflamatory. grandulomas in my muscles and joints cause alot of pain for me.

i was dx'ed with fibro before i showed any inflamation or elevated ACE in my bloodwork.

my rhummy and pain doc both agree that my pain is from the sarcoid and not fibro.

i do belive you can have both tho

i also belive you can have both saroic and mixed connective tissue disease

its all in the bloodwork. there are spefific markers for MCTD that don't show with just sarcoidosis

deleted_user 12/30/2011

I was diagnosed with lupus 17 years ago. then 8 years ago I had a chest xray which showed a granulomatous disease. All of my symptoms are consistent with sarc not lupus.I have also developed adrenal insufficiency and I have arthritis of my spine, heart valve disease, SVT (heart rate up to 225), peripheral neuropathy, etc.

deleted_user 01/08/2012

holy crap!!! 225 is a really high sed rate! my rhummy told me that mine was way low and i was lucky she did tell me that some of her patients are in the 100's and even in the 200's

blease your heart! you seem like a trooper!

if you need an ear julien i'm here.

i thought i had lupus for a long time but it never showed in my bloodwork

do you have an elevated ACE? i know not all sarcoid's do.

mine is 88 i'm wondering what yours is cause your sed rate is so high.

hugs to all

it sucks sitting around and collecting diseases!

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