MGUS + pulmonary sarcoidosis

Welcome, @suedavis313. We have several members here who have MGUS or pulmonary sarcoidosis. I've added this discussion to the Lung Cancer support group as well to see if any other members have both.

In the meantime, you may wish to also join these discussions:
- Pulmonary Sarcoidosis: How are you dealing with it? https://connect.mayoclinic.org/discussion/sarcoidosis-2c9d88/
- I'd like to connect with other MGUS people https://connect.mayoclinic.org/discussion/mgus-diagnosis-1/

Hi, I was diagnosed with MGUS November of ‘22 and Sarciodosis just yesterday. Is there a link between the two? Hematologist wants me to now see a rheumatologist but the wait in my area just to have that office review my file is 12-14 weeks out. I have a repeat chest/ab/pelvic CT and blood work scheduled for April. He didn’t seem too concerned but when I look at all the elevated numbers on my blood work I am nervous. I know, don’t look at my blood work, right? Is there anyone else out there with both diagnoses? Any information would be greatly appreciated. Thank you!

Welcome @birk17. Fellow member @suedavis313 started this discussion about MGUS and sarcoidosis. I moved your message here so that you can connect with her.
- MGUS + pulmonary sarcoidosis https://connect.mayoclinic.org/discussion/mgus-pulmonary-sarcoidosis/

I can imagine you're concerned. Try not to add stress with worry. I know, that's so much easy said than done. Your hematologist is aware of the elevated numbers on your bloodwork correct?

I also have mgus and pulmonary sarcoidosis. Just saying the words can make me feel bad. As of now neither is getting worse. My medical doctors are of the ‘wait and see’ school. I have been working with a nutritionist and also a physical therapist and blood work numbers have improved incrementally. The physical therapy helps with the bone pain. Please let me know how your journey goes.

Yes he is aware of everything. All started with routine physical and blood work with my PCP. Next thing I know he’s referring me to the hematologist who ran more extensive tests, bone marrow biopsy and CT scan. He didn’t specify what type of sarciodosis, he just said my numbers were elevated. CT scan showed inflammed lymph nodes mainly in abdominal area. I’m making changes in my diet while I wait to see rheumatologist. So far no bone pain but my energy levels fluctuate alot. One day I feel like I’m back to myself and the next I have trouble climbing the stairs normally. It just scares me that a lot of my numbers were elevated and platelets are going up and down. I know he is the expert but it’s still unnerving.

I also have red/brownish spots on my skin. When everything started I had small red spots all over my abdomen. I thought it was just an allergic reaction to something. Then spots would appear on my legs, then go away, appear on arms and then go away. Now I have reddish/brown spots that have not gone away in months. What I find interesting is they are exactly where some lymph nodes are: armpit, above clavicle and inner thigh. Has anyone else experienced these spots?

That’s great the nutritionist and physical therapy are helping. Do you find your energy fluctuates?

Thank you. Yes he is aware of the numbers. I’m hoping for better results when I go back to see him at the end of April.

Hmm, day to day my energy level is the same. Does yours fluctuate?

I’ve noticed it does. Going to keep a log of everything so when I see the rheumatologist I have a list of what is working (diet, etc) and what’s not.