Anyone had sarcoidosis in their joints?

Posted by barscr2 @barscr2, Feb 7 8:11am

Wondering if anyone has sarcoidosis in their joints, also have small fiber Sarcodosis.

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After 23 years I’m finally getting a diagnosis because of a rash it took 3 years to diagnose. I’m a RN, retired due to disability. For decades I was misdiagnosed and had osteoarthritis that disappeared.
I finally had an abnormal lab!
ACE at 61.
I’m pretty sure my dermatologist was correct because sarcoidosis fits perfectly.
I’m trying to decide if I should consider litigation for copays and diagnostic services since 2003.
The pain and being stereotyped as a drug seeker has literally made me suicidal!

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I would be interested to know more about your diagnosis, how it was determined and your symptoms. My mother had sarcoidosis in her lungs and my sister and I have been diagnosed with Sjogren's, RA and are HLA-B27 positive (she also has a diagnosis of Ankylosing Spondylitis). I find that sarcoidosis pops up frequently when I search for some of my symptoms and have wondered if that's a possibility; I know it can be hard to diagnose.

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Profile picture for fairn @fairn

I would be interested to know more about your diagnosis, how it was determined and your symptoms. My mother had sarcoidosis in her lungs and my sister and I have been diagnosed with Sjogren's, RA and are HLA-B27 positive (she also has a diagnosis of Ankylosing Spondylitis). I find that sarcoidosis pops up frequently when I search for some of my symptoms and have wondered if that's a possibility; I know it can be hard to diagnose.

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@fairn
It has been a 23 year nightmare of misdiagnosis, normal labs, psychiatric treatment of exacerbations and remissions.
Presented in left knee as a teenager and progressed to multiple system involvement.
Currently still performing my 17th round of diagnostics but we have Granulomas in skin biopsy, ACE at 61, persistent borderline
Ok

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Profile picture for cawolfwitch @cawolfwitch

@fairn
It has been a 23 year nightmare of misdiagnosis, normal labs, psychiatric treatment of exacerbations and remissions.
Presented in left knee as a teenager and progressed to multiple system involvement.
Currently still performing my 17th round of diagnostics but we have Granulomas in skin biopsy, ACE at 61, persistent borderline
Ok

Jump to this post

@cawolfwitch I'm so sorry to hear that, but not terribly surprised. I have been told I have mild apical scarring in the lungs, supposedly from a prior (unknown) granulomatous disease. A pulmonologist was adamant that it couldn't be sarcoid due to the location. I have wondered about the skin involvement, I can feel small granule like spots in my skin, particularly the abdomen, but nothing shows up in an MRI. Was the skin biopsy done after scans failed? Thank you for your response, hoping the diagnostics will provide the answers you need.

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