Diagnosed: MGUS

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

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.

@maddogstormy @scbookgirl75
I’m so glad for this discussion. It’s one of those “who needs to think about this right now” moments for me. I have been so distracted by recovery from a planned reconstructive surgery which I botched by falling. It’s a reminder that we take one day at a time dealing with our health, but we also need to consider what we want the rest of our lives to look like.
MGUS is not cancer and the risk of progression is low, but for some it does progress to smoldering or Multiple Myeloma. We must be diligent and do our part in the watchful waiting response. Hopefully we get a good Hematologist/oncologist who has a great deal of experience treating Multiple Myeloma. They can keep abreast of the studies, trials and coordinate our treatment with specialists treating coexisting conditions but ultimately, we must advocate for ourselves.
If I am burdened by other health concerns that require my focus, you can bet that I will be passing the football to my hem/onc guy and making sure he is paying attention. In my case, he scheduled an appointment for scans and blood draws for next week well in advance of my surgery. He can pay attention to my progress through shared medical records. Once I can walk again without a cane I can get back to business.
Since most of us who write in this forum are not medical doctors, we do not interpret lab results or give medical advice, but I do enjoy reading about people’s experiences, what they have tried and what seems to help. We can talk to our specialist about this and see what they have to say and make sure that we’re not doing something that is still advised for whatever reason. I view my relationship with my hem/onc doctor as one of teamwork. I hope everyone finds that doctor who is a good fit in this regard. I don’t have the medical expertise, but I know my body pretty well having lived in it for 73 years and there is some benefit to that history.
I look forward to hearing more about your journeys so I hope you will stick with us and let us know how things are going along the way. I’d like to hear more about your acupuncture, MDS.