Connect
Comment receiving replies
I didn't want to start a new thread for something similar to your post-so I apologize and don't mean to be "hijacking" your post. 🙂 What were your markers/blood levels /urine screening, etc. that resulted in a MGUS diagnosis? Currently working my way through some tests and such and sort of feel that may be the road we're heading down. Like others, it started with visits to the dr. for something else-my PCP referred me to a pulmonologist since I have had Covid 5 times and keep having low sats. CT of my chest showed micro-nodules and some inflammation. Sats drop occasionally to high 80s and upper 90s, but will then right themselves in a bit. I have had lots of fatigue and hip pain. Also frequent kidney stones. I've had iron deficiency anemia for over 15 years, and my latest tests show that my iron is 25, Transferrin sat is 5%, TIBC is high at 457, and ferritin is low at 10. (All typical for iron anemia.)
However, the latest batch of tests show a few oddities that make me wonder if MGUS is on the horizon:
A UPEP 24 hour urine showed my protein is 279, which if I am reading online correctly, is a bit high.
Albumin is low at 26.7% (From what I read, 50-60% of your urine protein should be from albumin?)
Beta Globulin is high at 33.2%, my IgA is 499 (but down from 537), my serum immunofixation electrophoresis showed an increase in the beta fraction with a beta globulin of 1.4 g/dl.
IgG subclass 3 is low at 14, my albumin is low at 3g/dl,
From what I've read a high IgA and low IgG3 can mean possible plasma cell or immune dysregulation.
With the beta globulin spike on urine electrophoresis and the moderate proteinuria, along with low albumin, along with the iron issues, elevated platelets, fatigue, etc. I am wondering if anyone else had similar issues?
I realize MGUS isn't cancer and just requires careful watching but I tend to worry less when I'm well informed. Thanks for any info, and well wishes to you all on your health journeys.
Replies to "I didn't want to start a new thread for something similar to your post-so I apologize..."
Hi. Thank you for connecting. I am not sure I have the ability to take a dive into your numbers but I can share a bit about my journey. MGUS arrived from a low hemoglobin on a CBC that I had when I was putting together program to recover from Long Covid. That lead very quickly to an elevated Mspike and light chains that were out of normal range. I choose not to educate myself in the blood disorder focusing instead on recovery from Long Covid. That took a lot of work. Many doctors. Many tests. And I was successful. Getting a clear in fall 24. Then everything went haywire. That lead to an appointment at Dana Farber and many more tests including a second bone marrow biopsy. Mar 25 I was elevated to Smoldering. Still a weird and fuzzy diagnosis. Not as funny to me as undetermined significance. Clearly more serious and since then a lot of eduction. And community building. I would say focus on rhe symptoms and do your best to address them and use this time to live as fully as you can. So many symptoms are possibly connected to this disorder but it is hard to verify. Acupuncture three times a week was part of my program in the fall of 21 and I know that really helped me recover. Good luck in your coming month. I am going to travel for a bit this summer and I am making some big changes in my planning for the next 5 years. ChatGPT has been a powerful tool to think this all thru as well. Take care and thanks for connecting again.
Connect
Hi @scbookgirl75! Welcome to Connect. You’re not hijacking this tread at all. Conversations between members is what we’re all about. It’s a comfort to be able to speak with others sharing the same symptoms or diagnosis.
I think your comment was meant for @sandramgus but it doesn’t look as though she’s been active in the forum since she first posted this discussion. But there are plenty of members here including @pmm, @gingerw @paulita and others who were diagnosed with MGUS and know exactly what you’re going through. They’re willing to answer any questions you might have and share their experiences.
You’re not limited to this discussion either! If you type MGUS in the upper search bar you’ll also get a list of all the discussions regarding this blood condition.
Are you currently working with a hematologist or is this testing being done through your PCP?
It doesn’t look like ! s