Does anyone else have MGUS?

@gingerw , sorry your going through alot!! Good hear your keeping up with everything and travels. My best to you!!
I used to go every 6 months, then I had a very caring, thorough dr that moved me to 4 months. He is no longer there. Now since last year I have a new dr, that said once a yr is ok, although I didn't get to see him, as I mentioned. I think the mgus is so slight, and with no progression they feel it's ok. It really depends on who you get🤷‍♀️.
I'm really not sure if I want to stir up anything right now, especially seeing my labs are mostly in normal range. I wish I could somehow, just let someone know up there, about my last visit, and I will not be mislead next time about seeing my Dr. Kinda disappointed I didn't get answers to my burning aching feet....I told her I had to get a stool for the kitchen so I can continue cooking, etc and get off my feet.
Her notes are off too...she doesn't mention that, and says mild fatigue...WHAT!!

@dazlin
I definitely support your asking questions. I was a medical social worker for 15 years and assisted patients in conferences with their medical teams. I always encouraged patients to write down their questions and either ask for a phone or in-person conference during which to ask all these questions until they understand the diagnosis and course of treatment for the disease and all symptoms.
Doctors can be intimidating but you are important and need information. Don’t put it off.
For me, I get aches and pain which is probably age-related, but I still tell my doc about it. I have no idea if there is any significance unless I ask and they examine. So far, so good. I feel fortunate that my numbers are fairly stable.
Wishing you the best outcome. I hope that one of the questions on your list is “why are we waiting a year for an exam?” Even if that long wait is medically defensible, if it makes you anxious, they should bump it up.
Patty

Hi all. Could anyone recommend a hematologist/oncologist in the Washington DC/Northern Virginia area who specializes in Multiple Myeloma and related diseases? I am currently diagnosed with MGUS. Thank you so much!

My PCP gave me a referral to one. Have you asked your doctor for one?

@dazlin, were you able to discuss your foot pain and fatigue with your Primary? I don't know what tests you had to confirm MGUS, but maybe they should delve a little deeper. For instance, you could get nerve testing (EMG/NCS) to determine whether your symptoms are due to neuropathy, and if so, what sort of damage is occurring and to which nerves. That can make a difference for diagnosing the plasma disorder and for treatment.

Now having a diagnosis, I just filled out my Bio and will repost here, because it kinda belongs in this thread.

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Bio
Newly diagnosed with MGUS in Dec. 2023. Peripheral neuropathy was the presenting symptom, as I went to get that checked out in the summer of 2023. Also pretty bad fatigue. The only thing that was abnormal in the first few rounds of labs was free light chains. No M-spike. After 3.5 months of more labs, fat aspirate and bone marrow biopsies, I've got basically a kappa LC-MGUS diagnosis with no current way to address the neuropathy and fatigue, and waiting 6 months for blood/urine re-testing.
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I didn't have room in the bio to include all the details, including references from the voluminous (!) online reading I've been doing.

During the past few months of investigation, I was mostly alarmed at the prospect of having AL amyloidosis and most of my reading sought to support or contradict that. The fat pad aspirate and bone marrow were amyloid-free, thankfully, but I'm still left with questions.

The short version is that I'm not confident that my MGUS is an indolent symptom-free age-related and harmless aberration. For one thing, how can doctors and researchers call MGUS "symptom-free" when fatigue and peripheral neuropathy have clearly been associated with it in some people?

I think there's a problem with current definitions. "Symptoms" to watch for in MGUS, lest it become multiple myeloma, include CRAB: elevated [C]alcium, [R]enal failure, [A]nemia, and [B]one pain. Thus neuropathy isn't a "symptom" because it doesn't necessarily indicate progression to MM. What?!

Commonly-accepted vocabulary used for MGUS seems severely lacking in clarity.

Moreover, MGUS may progress to disorders OTHER than MM, such as AL amyloidosis, Waldenström macroglobulinemia, and other funky cell things with funny löng names. What are the CRAB equivalents for those disorders, then?

I know that generally, in MGUS, we watch for increased M-spikes and free light chains. People like me don't HAVE M-spikes, but can at least watch FLC numbers. Other folks have "non-secretory MGUS" and are stuck waiting for signs of heart, kidney, or bone failures, I guess. (Nerve damage doesn't seem to count.)

This just skims the surface of the things I'm concerned about, and I'd love to have some discussion about them.

Marion Cole, MD | Inova
https://www.inova.org/doctors/marion-e-cole-md

Yes and he gave me one. Then I googled the doctor and he had good ratings. I’ll be seeing him on Dec 26.

@nancyworld , I did see my primary this past Tuesday. He saw the lump on my foot, and says it's on the bone from calcification. Asked if I injured or fractured my foot. I said no. As for my burning aching feet, sometimes legs if I'm standing too long, he believes it can be back related. He showed me a stretch for my foot to help loosed up the ligament...thats about it. The fatigue I feel, didn't seem to prompt him for any further tests. If my foot becomes more troublesome, I'll book myself a podiatrist. Dr says they'll probably boot it, and thinks that's worse. No explanation and rules out neuropathy....labs from mayo are only showing slight mgus, all else is good....not diabetic either.
So basically, I'm back on my own, doing what I feel is best for me...no one really understands the fatigue I get...literally wiped out. I'm also learning to pace myself, and take breaks. I have a tendency to want to keep going and get a thousand things done in half a day. Thanks for asking...hope you're doing well!

@dazlin, for the MGUS labs, were they using serum electrophoresis with immunofixation (SPEP/IFE), 24-hour urine electrophoresis with immununofixation (UPEP/IFE) and serum free light chains (SFLC)? Those three tests are the standard first pass at diagnosing MGUS.

If they did those and you want to share the values or message me personally (can we do that here?), I'm happy to share what I've learned. Of course I can't give medical opinions, but I can share links to articles that are relevant. For instance, there are "stratification" tables published online that list lab values for various levels of risk of progression to MM.