Does anyone else have MGUS?

@dave7 Welcome to Mayo Clinic Connect! How long ago was your diagnosis, and what has your medical team advised for "watch and wait"?
Ginger

Hello kayabbot! I have been diagnosed for over 3 years with mgus, initially biclonal (IgM lambda, IgG kappa, but also once IgG lambda). Now my latest tests show no identifiable monoclonal protein but I do have elevated Lambda (5.36 g/dl I think is the units).
I was given a BMB at that time and while it showed small percentage (1-4%) the FISH studies showed a Tp53 mutation and a gain of 1q which was terrifying. I went to 3 MM specialists who said those mutations were not significant because they were around 10% of the cells. I have been told repeatedly that it is doubtful that this will ever progress and I don't need to worry about it. I haven't had any other bmb but did have a full work up of complete pet/ct scan, mris and skeletal surveys.

I have finally let go of the extreme anxiety, yay! I wish I had never had the testing done as I continue to have no symptoms. I agree we should put it out of our minds and live as healthy as we can. I am 66 and hoping to live a lot longer.

I was test by my Neurologist which I through was odd.
They also tested for M protein and light chain and lambda tests. So far my light chain was slightly elevated but my M protein was negitive. So far the doctor was not to worried.

Donna, I will be following for information as well. I have my six month wait and see CT in May. So I am right behind you. (I’m terrified of the bone marrow biopsy. I’m hoping it doesn’t come to that. )I have an enlarged spleen so they’re monitoring that with contrast CT, which I have a pretty awful allergic reaction to the die the first time. Scary. I hope we both do well. We are fortunate to have good family and network of friends around us to Shepherd us through this.k

Hello everyone

I am new to this group. I am in my late 40’s and just diagnosed with MGUS the past summer. Which was scary and devastating to myself and my family. I didn’t know anything about MGUS. The info I received from the Hematologist was very not helpful. The dr didn’t explain things well or give me information on what to look for concerning symptoms which was upsetting. I felt lost and not taking care of and my new MGUS diagnosis was not taking seriously. I have been suffering from pain all over for years but just kept suffering. I had testing for rheumatoid arthritis and recently found out that I have fibromyalgia and diabetic neuropathy. I am type 1 diabetic for years. It has been a journey that I am still learning. The recent diagnosis was found out by a blood test in rheumatology clinic for the second time but the second time is when I found out that I had MGUS. I also went to dr Google to check out more info on this. I had a referral to hematology clinic and had only blood work to confirm and the bone marrow biopsy but no full body CT scans due to insurance. So at this point I have not had a recent full body CT scan. Which is concerning to me but my hematologist would not push the full body CT scan with insurance even though insurance sent a letter explaining what they needed to approve the Full body Scan. My doctor just looked at all my other scans or X-rays for different times and areas that I had X-rays. What should I do at this point? I am in the process of getting another opinion from a different hematology clinic. Any advice or suggestions?

If this helps, I wass diagnosed ten years ago and took it very seriously, My oncologist/hematologist, after taking dozens of tests, includingmy urine and a bone marrow biopsy, said I'll see St. Peter from something else, not MGUS.

I see him once a year (my doc, not St. Peter at the pearly gates).

@greenlantern Welcome to Mayo Clinic Connect. It's good to hear from someone who has has a long-term MGUS case and is still going strong!

Do you get testing done at that yearly appointment? Have you seen any trends?
Ginger

@gracefullywomen4 Welcome to Mayo Clinic Connect. If your hematologist has determined you are not high-risk MGUS, they might be reluctant to order the scan. But a low-dose whole body CT scan may catch bone lesions and is usually recommended.

Always advocate for yourself! If you can get a second opinion, do so. Here is a link to the International Myeloma Foundation, that a lot of good information: myeloma.org
Ginger

Yes, blood tests for the usual markers... immunoglobulins A, M, -- the alphabet. No, trends, but I've had Myasthenia Gravis for 22 years, so that is the king of comorbidities.

If you haven't heard of MG, I explain it like this: if i see a curb while walking, my brain says to my nerves "send a message to your legs to step up" -- but my legs say "never got the message". So, I stumble.

Damn acetylcholine receptors. I'm not drunk, I'm just uncoordinated.

Thank you Ginger! I will keep on advocating for answers to my healthcare.