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Managing asymptomatic sarcoidosis in bones and organs
A long workup after a bone marrow anomaly appeared in an MRI, including two biopsies on one of many locations that showed high activity on a PET scan, revealed some noncaseating granulomas so likely sarcoidosis (but no malignancies). Lung involvement is minimal - bones and spleen and a little bit seen in liver but not easily biopsied plus some lymph glands show activity as well. Questions are - 1) what type of doctor should manage this diagnosis, and 2) I have significant lower back pain where there are vertebral lesions - what kind of doctor can distinguish whether this pain is from obvious spinal stenosis and scoliosis, or from the sarcoidosis?
Just discovered this site. Looking forward to shared insights.
Thanks!
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I forgot to add that other than back pain, I am asymptomatic though I did have high calcium for a while but that has returned to normal levels.
Get a good primary Doctor Who will manage your appointments and your care.
Talk to them take a diary of your problems and symptoms and ask for help.
I have a great primary doctor that will advocate for me.
Good luck
I was formally diagnosed with sarcoidosis 3 years ago. From my understanding, I have had years prior. I had gone to a dermatologist, due to a spot on my leg seeping. A biopsy diagnosed sarcoidosis. Since this diagnosis, I have had to have my spleen removed. Sarcoidosis is also present in my lungs, liver, and appendix
I found a very good rheumatologist in Pittsburgh, Pa. who manages my sarcoidosis. My understanding is rheumatologists do specialize in auto immune disease. I see this doctor every 3 months, which also includes blood work to determine presence of inflammation. I am suggesting locating a rheumatologist. Plus if this condition spreads to skin a dermatologist can also be included.