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MGUS + pulmonary sarcoidosis

Posted by suedavis313 @suedavis313, Jan 5, 2023

I was diagnosed with MGUS in Dec. 2021 and pulmonary sarcoidosis in May 2022. Both are being monitored-MGUS blood test every 6 months. Sarcoidosis baseline tests only. I had an anesthesiologist recently tell me she’s ever seen chest CTs as bad as mine. I’ve been trying to research the occurrence of these together without much luck. Wondering if there are others that have both of these and their experience.

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gina5009 | @gina5009 | Feb 7, 2023

I have just been diagnosed with MGUS, but told not important at this point, come back in 6 months. I am wondering, I had breast cancer when I was 36 and they removed 14 lymph glands from my arm pit and chest. Could this removal of lymph glands, be the reason I am showing some abnormality in my blood work?

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gina5009 | @gina5009 | Feb 7, 2023

I have just been diagnosed with MCUS WITH A SLIGHTLY LOW PLATLET COUNT. I HAVE JUST HAD COVID-19 AND THE FLU. IT IS TIME FOR ME TO GET PHIZER BOOSTER, AND SHINGLES VACCINE Should I wait, or get these vaccines now?

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Colleen Young, Connect Director | @colleenyoung | Feb 14, 2023
In reply to @gina5009 "I have just been diagnosed with MCUS WITH A SLIGHTLY LOW PLATLET COUNT. I HAVE JUST..." + (show)
@gina5009

I have just been diagnosed with MCUS WITH A SLIGHTLY LOW PLATLET COUNT. I HAVE JUST HAD COVID-19 AND THE FLU. IT IS TIME FOR ME TO GET PHIZER BOOSTER, AND SHINGLES VACCINE Should I wait, or get these vaccines now?

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That is a good question to ask your oncologist just to be sure.

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ialogic | @ialogic | Mar 5, 2023

Regardless of CT, how do you feel? Are Pft’s/oxygen good? MGUS May be incidental finding due to other autoimmune diseases. You should get an ANA, ANCA panel with A1AT level checked. If you develop neuropathy, a fat biopsy may be helpful in diagnosis.

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canadabob | @canadabob | Mar 30, 2023

My MGUS was discovered by accident in late 2019. Coincidentally I had had a full body MRI done at that time that showed a "hilar mass".

Much investigating, including a bronchoscopy determined that it was sarcoidosis. I was 100% asymptomatic. I was followed for 3 years (xrays, blood and lung function) and then cut loose by the pulmonolgist.

Hope this helps a bit.

Bob

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jefflawrence62 | @jefflawrence62 | Jun 27, 2023
In reply to @colleenyoung "Welcome, @suedavis313. We have several members here who have MGUS or pulmonary sarcoidosis. I've added this..." + (show)
@colleenyoung

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/

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Finally found someone else with same issues. Diagnosed with MGUS 2017, and Pulmonary Sarcoidosis Oct. 2022....seeing Hematology and Rheumatology concurrently. None of the treatments seem to help. However the Steroids seem to help with some of the neurological issues I have. Lots of pain, discomfort, and just feeling bad. WHEN it starts it seems to get worse quickly. Hoping for something that may help soon. Hydroxychloroquine keeps me awake, and can't tell if that helps or not. So just having in their day by day, managing most of it with pain medication. Hang in there, one day at a time seems to be the only way.

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