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MGUS Symptoms: What symptoms did you experience?
Blood Cancers & Disorders | Last Active: Oct 31, 2025 | Replies (117)Comment receiving replies
@allstaedt57 - My husband, also, with SM for a couple of years and then full blown MM.. went into chemo...neuropathy hit him so bad he was never able to walk afterwards....now 4 years after he passed way with MM and Pulmonary Hypertension (and yes, in the middle of the Covid mess) I was diagnosed with MGUS. Really caught me off guard. Did this diagnosis for you make you question how a disease like this is unlikely to be in the same family..not blood related? Does this make you question your children, if there are any, having this same diagnosis at some time in their lives?
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@loumartin
I was told by a leading expert in MM / MGUS about 15 years ago at the NIH in Bethesda, MD that MM was NOT hereditary; however since that opinion and after he left the NIH and started practicing at Sloan Kettering in NY, there has been information published that it can be linked to blood disorders.
Personally . . . mind you I am NOT a lab tech, doctor or nurse, I believe if there is a malignancy in anyone's family, it increases your chances to develop that malignancy or another form at some point. That's just my personal opinion but it, I don't think, can or SHOULD be discounted as a factor.
MGUS is another condition that deserves more research and more follow-up, again in my own personal opinion. I believe there are a whole range of symptoms that could be linked to it. Peripheral nephropathy and nerve pain, in particular, as well as bone problems.
I'm on a mission to find someone . . . ANYONE, in the medical profession who will listen to me long enough to collect symptomology and put the pieces together to, at a minimum, agree that MGUS is a very real blood disorder that can cause a wide variety of symptoms and explain them to a patient when they are diagnosed with it.
Your story is one that was most helpful to read. THANK YOU for posting it!