Diagnosed: MGUS

Appreciate the question. I just directed my pest company to skip this time while I send the chemical information to my MM specialist (I have SMM). Logic tells me yes, stop. So what if bugs eat up my house if I’m not around to see it? Now you know how my mind works! But I did ask and receive the document listing the chemical the pest company uses and will send it to my specialist. I’m not sure she will know as there’s so much about chemicals we don’t know the long term effects of.

Hi... Chin up!! I have also been diagnosed in October 25' with MGUS. I lost my father in January of 2021 to MULTIPLE MYELOMA; this of course is very concerning to me. I have had an "M" spike, and a paraprotein for 9 months. I have had IVIG treatments, to no avail. I also have severe copper deficiency, in which I get copper infusions for weekly. This entire process started with waking up one day, not being able to walk. Legs totally numb, and severe pain. KEEP UP ON WHAT YOUR BODY IS TELLING YOU, ALWAYS GO FURTHER IF YOU BELIEVE SOMETHING IS NOT CORRECT!! Keep up with your appts, and dr's, your body..... Let the BIG MAN HANDLE THE REST THROUGH PRAYER!

@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?

@pmm hello. I was diagnosed about 3 years ago by an arthritis doctor after complaining about leg pain. I was sent to a hemotologist who told me this is not uncommon and just needs monitoring with blood work every 6 months. He also mentioned that a bone marrow biopsy might be in order. After complaining about new pains in my feet which I was told by a podiatrist was neuropathy, he again suggested the bone marrow biopsy. I had it in October and thankfully no dreadful results. I see the mention of body scans here. That was never mentioned to me so I’m wondering if I should bring that up to him next time

PS. I just found out that the hemotologist and neurologist think my neuropathy is due to MGUS. The protein spike causes nerve damage, so they say

@positivethinking it’s amazing how much “mixed messaging” is disseminated by the various “ologists” I see. I have very well controlled type 2 diabetes but they all attribute my neuropathy to that. I see a neurologist, hematologist/oncologist, gastroenterologist and very well-trained PCP who all weigh in on symptoms that may or may not be attributable to MGUS.
My take away is that it doesn’t really matter as long as I am trying hard to do my part with dietary and medication management. I think MGUS is not a benign element and is, at least partially, responsible for my neurological involvement.
I am taking pregabalin (100mg x2 daily) for neuropathy pain. I tried gabapentin, but it made my fingertips tingle which to me seemed an unsatisfactory side effect.
My m spike is very low. Who knows.
One of the things that they look for when assessing progression of MGUS are bone lesions. So I have scans every six months to ensure that my bone integrity is good. That was actually how my MGUS was found. I was rear ended and in the subsequent ex rays, there was a dark place on my C2. Subsequent CT scans showed that the spot is attributed to arthritis and is not a bone lesion, but my blood tests showed that pesky M paraprotein and hence my MGUS dx.
So I would definitely encourage all my fellow MGUS travelers to insist on at least annual scans.
I hope your discussion with your Hematologist/oncologist is productive. Make sure that the need to get a bone marrow biopsy (or any invasive test) is explained to your satisfaction. Will you let me know how it goes?