Does anyone else have MGUS?

@dodgegirl2 Welcome to Mayo Clinic Connect. You are in the right place, asking questions!

Here is an article from the International Myeloma Foundation website, about MGUS. As you will see from our fellow members, most everyone goes a long time without ever advancing in their disease status to the next level, usually several years, if at all. The watch-and-wait can be frustrating, but it is crucial to keep track of things, as you already have found out.
https://www.myeloma.org/what-are-mgus-smm-mm
Do you have any questions for me?
Ginger

Hi, My name is Teresa. I believe being 77 years young things happen for a reason. In 2021 I was at the Mayo clinic in Rochester for other unrelated
problems. After getting home I printed out my records and saw the results of
an SPE test. They discovered a fraction M protein. What is this?????? Come to
find out MGUS. Since then I have had several SPE and IFE and Kappa/ Lambda test through blood work. In a way I am lucky. I have non-hodgkins
lymphoma called CTCL. Because of this my oncologist/hematologist does
Ct’s every 6 months and labs every month. January of this year they found a M
protein IgG Lambda same as the Mayo found. On June 6 this yr. my oncologist
did labs and Kappa/Lambda testing. They found M protein in the blood but also M spike on the electrophoresis. At this point because it is a small amount
my doctor will keep an eye on my labs. This is one reason you need a hematologist. I have searched up and down for basic information that tells what MGUS is so I can explain it to the family. I told my husband today, that
this is a watch and see. What I need to get more info on is M protein and the
kidneys. Today I had a kidney stent exchange. It is amazing to me more doctors don’t know about this. To answer your question. You aren’t alone.

Hi Ginger,

The neurologist has been sending me for tests every six months to monitor. Protein Monoclonal Band and free light chains...so I have about 8 tests, the last one being a month ago.

I asked him specifically a few weeks ago about seeing a hematologist and his reply was that they would simply do a marrow biopsy and that he thought it would be a waste of the specialist's time and of my time. Not sure why he's taken this attitude, but I'm going to ask my GP next week for a referral.

Bob

Acanadabob I typed out a reply and then it got lost in the etherworld! Go figure.

I would definitely ask for a referral to a hematologist/oncologist. There is most often a slow-to-no progression beyond MGUS into a more serious condition, but it bears monitoring. And is best monitored by a specialist.

Did your neurologist ever mention why they are opposed to you seeing a specialist? Hopefully you have access to the tests that determined the MGUS three years ago, so they can be used for comparison to any current labwork that might be done now.
Ginger

Thanks for the reply.

I think MGUS is too complex a condition for a non specialist to be in charge of. Good on him for calling for the tests, but I'd feel better if a hematologist looked at the results.

I will definitely be voicing that to my GP next week.

Bob

Hi @canadabob since you’re already in the MGUS support group you’ve most likely seen some of the information I’m posting below but it never hurts to get a refresher:

MGUS~Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood.

For most people it doesn’t pose a problem but it can progress into more serious diseases.
We have quite a few members in our forum who have also been diagnosed with MGUS. I’m posting several links to discussions on MGUS below, along with Mayo Clinic’s webpage on MGUS.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
~~~~
– MGUS: Please, let me know I not alone https://connect.mayoclinic.org/discussion/mgus-2d464e/

– MGUS diet: Any tips on food to enjoy or prevent progression? https://connect.mayoclinic.org/discussion/mgus-bgus-diet/

MGUS is a generally slowly developing blood condition but it’s still important to have regular bloodwork done to keep tabs on any progression.
A hematologist would be the better option than your neurologist as they specialize in blood disorders.
My suggestion is to followup with your PCP to see if it’s time to get that referral.
Have you experienced any changes such as
Bone pain,
Fatigue or weakness
Unintentional weight loss
Fever or night sweats
Headache, dizziness, nerve pain, or changes in vision or hearing
Bleeding
Anemia or other blood abnormalities
Swollen lymph nodes, liver or spleen?

Hi all,

I was diagnosed with MGUS three and a half years ago by a neurologist who doesn't seem to want to refer me to a hematologist.

I see my family doctor next week. Should I ask/ insist on a referral to a hematologist?

Thanks

Thank you Ginger! It is definitely a weight lifted when you know you have people to talk to! Sometimes receiving a diagnosis of MGUS, you wonder if you are the only one!

Always!

Wrt bone marrow biopsy and aspiration, I had it done based on the symptomatology which was driving the tests - my symptoms were without a reason besides pointing towards symptomatic MGUS or SMM. Sure enough, peripheral bloods and marrow biopsy & aspiration showed MGUS IgG with low IgA.
I was offered local and sedation but the legalities of driving prevented using sedation, and local anaesthetic doesn’t have much effect so I politely declined..plus, it’s easier without those to ‘feel’ what’s going on with needles into pelvis because I have 4x 10cm screws back there, inserted from the front side, and I wanted to be able to tell the doc if they’d inadvertently collided with hardware to facilitate a relocation for the sample extraction. Was a bit sore - not the worst I’ve experienced (but I do understand it’s all relative, and each person has their own tolerances and comfort levels). I did get a minor infection at the site, but I treated it with pressurised iodine a few times a day into the cavity (I squeezed it in using a thin rigid nozzle) and it recovered in I think around 8 days from memory.
It was worth finding out what was going on - especially the low IgA when aiming to understand why I get so many infections and end up on IV antibiotics when it ‘just shouldn’t happen’.
At least now I have data and evidence I can provide (prior to that, as hard as it is to fathom, I was being told I ‘imagined’ infections, peripheral neuropathy, and memory loss/cognitive decline).
Keeping busy with life outside of worrying what those little blighters are up to inside the marrow is my priority though; I don’t tend to bother with it now that I know the cause of the issues I’m working with. I go for my usual tests, then forget about it the next day till the next round of tests.
Having something of interest and purpose helps.