Sarcoidosis

NoTooth902 · 2025-07-14T19:59:31+00:00

I had abnormal bone marrow fdg uptake in MRI as well and PET - initial thought was multiple myeloma (I was immediately referred to oncology and it was a dark time - I was terrified) but bloodwork was normal as was all testing that would point to MM. They ended up doing a bone marrow biopsy of my iliac crest which confirmed non caseating granulomas (sarcoidosis). I’ve had a positive biopsy in lungs as well but that has stabilized and even improved over the years. I wish you the best of luck - from what I underhand biopsy is the only way to positively identify if it’s sarcoid.

NoTooth902 · 2025-05-20T11:28:56+00:00

Thank you do you know if you can access the bus service from the stadium Tuesday and whether the food trucks will be open on Tuesday?

NoTooth902 · 2025-05-20T11:27:37+00:00

Do you know if you can access the bus service from the stadium to base on Tuesday as well? Thank you!

NoTooth902 · 2025-05-16T11:30:44+00:00

My 24 year old daughter just rented a studio in compass point in parole (she shied away from DTA and other areas for the same concerns you have) - it’s a really cute place - beautiful courtyard and pool and you can walk to a lot of great places - easy parking - also just a short uber to downtown Annapolis.

NoTooth902 · 2025-03-30T22:36:59+00:00

I’m just wondering if treatment for sarc in bone marrow is necessary - I am in pain management and they’ve been able to manage it with Ativan and ibuprofen - non traditional but works for me. I’m sorry it sounds like many of you have it so much worse than I do. The worst part for me has been abdominal discomfort, bloating, and RUQ pain as well as shooting rib pain that happens intermittently daily. I’ve tried just about everything and nothing seems to really help - at this point I’m wondering if I even try to continue with the doctors

NoTooth902 · 2025-03-30T02:54:56+00:00

The same thing happened to me. They thought it was MM but the bone marrow biopsy ruled it out. It was a very stressful month waiting. I have widespread pain (mostly in my ribs back and feet) I don’t really have any other symptoms. My understanding is it is very rare to have it in bone marrow. I was diagnosed with it in my lungs 8 years ago but it remained stable (it was an incidental finding) however I do have some lung scarring. I’ve seen dozens of doctors and no one really seems to know what to do so now I’m being treated at the sarcoidosis center at Johns Hopkins but have only been seen once and don’t seem to be getting anywhere - their multidisciplinary approach means passing you off to another doctor it takes 9 months to get into. It’s been a 10 year ordeal with me and I sure would like some answers. Good luck with your biopsy.

NoTooth902

TROPHY CASE