Sarcoidosis and LE

o2bhealthy

I have a question for our resident LE experts... I recently had a CT scan and was dx'd with sarcoidosis.   As I research the disease/condition, I have started to wonder if the underlying autoimmune condition could be the reason why my LE, though mostly subcutaneous, causes me so much discomfort?   

I have always felt that I was a huge wimp when it came to my LE and that my pain was out of line from the 'norm' (if there is such a thing).   I have bilateral LE and truncal LE.  My arms are pretty similar in size, although my left bicep is 1/2 cm larger then the right.  I also have the typical back roll(s) associated with truncal LE but I am not sure if the puffy upper belly is LE, sarcoidosis or just plain old fat

I will be meeting with my onc on Dec 3rd to learn more about the condition and how extensive it may be...all I was told was that my recent CT showed the lymph nodes in my chest were uniformly swollen and it is indicative of sarcoidosis...

Has anyone else heard of this condition? 

BeckySharp

o2b--My brother had sarcoids a few yrs back.  I remember him being on very high doses of steriods which made him swell all over.  He is now sarcoids free and doing well.  I can't help more than that but I do wish you all the best as you investigate this condition.

o2bhealthy

Thanks Becky!  My research shows that some people don't need treatment and it can self correct over time and for severe problems steroids are rx'd...I am hoping to avoid steroids since I don't feel like I have a lot of the typical sarcoid SE's, my dx was basically a fluke discovery secondary to other issues.   One thing I found interesting is that the sarcoidosis likes to set up in the lungs and the last few times I got a cold, it went straight to the lungs, turned in the bronchitis and I needed a bronchial inhaler and antibiotics to clear up the cough...