Does anyone else have MGUS?

Lori, oh I know it is inevitable unless something else snatches me from this earth and I am all for it if things change. I’m not one to embrace complacency. My doc is in full agreement and if he wants one I’ll agree.

Woops! Sorry Ginger. I guess I had Lori on my mind. 😉

Oh oh… only good thoughts, I hope! 😅

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.

Always!

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!

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

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
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– 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?

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

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