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@sandramgus
Hello! Welcome to Mayo connect. We have quite a few members diagnosed with MGUS, myself being one of them. it seems that I tell my diagnosis story a lot so for those of you who have heard it just tune out of my post but please share yours for the new members.
Like almost everybody else, my diagnosis was because I was seeking medical guidance for something totally unrelated. I had been in an auto accident and was rear-ended so I had neck pain. my PCP ordered a CT scan and they found a dark spot on my spine at C2 among other things. That piqued the curiosity of my PCP so she ordered more tests. The bloodwork came back with a paraprotein in my blood, which got me a ticket to a hematologist/oncologist. It was a long wait before I finally got an appointment. The Hem/Onc doc ordered his own specialized testing, and verified that I had MGUS.
By then I had totally freaked myself out by reading everything I could, in my Google searches about multiple myeloma and MGUS. Dr. Google is quite fond of the worst case scenario. My anxiety was sky high and it even raised my white count. I felt sick and I just couldn’t shake a sense of doom. And to top it off, I could not get into the hematologist/oncologist of my choice.
I did finally get into see the new guy and lo and behold, he was really a good match for me. He is not overly reactive and is able to read me well enough to know when I need some reassurance. He’s on top of the literature, and has a great deal of experience, dealing with multiple myeloma and MGUS.
The good news is MGUS is not cancer.
https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367
Among other blessings, I get the best preventative care of anybody I know. I started out with quarterly blood draws and scans and now I see my hematologist/oncologist every six months with scans and blood draws. My “numbers” have not really moved. They have crept up a little but nothing I am concerned about. Also, I try to take good care of myself and, try to eat, sleep and live healthy. Last, but not least, I found the Mayo Connect community which gives me support, camaraderie, and cutting edge information/research from the Mayo clinic.
Can you tell me a little more about your current situation? Have you found a good hematologist/oncologist? If so, how often will you go in and what is the plan for your care?
Replies to "@sandramgus Hello! Welcome to Mayo connect. We have quite a few members diagnosed with MGUS, myself..."
Hello, Patty:
I'm sharing my K/L ratio values. They fluctuate, but the trajectory is to inch upwards.
My current Hem/Onc does not seem to think it's anything to worry about and we are just watching it with quarterly lab testing for K and L free light chains and their ratio, CBC, calcium, creatinine level (kidney function). I asked for bone marrow biopsy and/or scan. He said I did not need that.
Prior to the Hem/Onc I'm seeing now, I had seen another one when I was on a different insurance, and he had said the same thing.
I'm open to your thoughts and suggestions.
Thanks.
Date and Value Value Normal Range
Feb 10, 2025 0.26 to 1.65
2.73High
Oct 30, 2024
2.29High
May 31, 2024
2.05High
Feb 17, 2024
2.11High
Aug 30, 2023
2.21High
Feb 19, 2023
2.35High
Jul 28, 2021
1.57
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I was also diagnosed with MGUS approximately one year ago. This was found by routine lab work by my rheumatologist. I was scheduled with an oncologist through CARTI very promptly. My bone marrow biopsy came back clear, however, he said he did not get the best sample, but was satisfied. So far, I have only had 2 blood draws. The first there was no change, the second one had a slight change, but the numbers were still OK. However, I have been noncompliant and not followed up with my appointment. I don’t know if I’m doing this out of fear or sheer neglect. But recently, my first cousin was diagnosed with multiple myeloma. Period I am scheduling an appointment for the next week. In the last two months, I’ve had aggressive headaches, blurred vision, fatigue, memory, loss, and severe headaches. Has anyone experienced the symptoms along with this diagnosis? Now there is a component of fear setting in