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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Sep 19 12:31pm | Replies (818)

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@fayeraye

I was just diagnosed with MGUS AS OF Aug 30, 2023. My doctor said I need to be re-checked again every 6 months. My question is when should you see a specialist, hematologist/oncologist? Does anyone know? I have no symptoms and they caught this at my regular check up.

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Replies to "I was just diagnosed with MGUS AS OF Aug 30, 2023. My doctor said I need..."

Hi @fayeraye. First, a little bit about your new diagnosis from Very Well Health, which give a great explanation of this condition:
“Monoclonal gammopathy of undetermined significance (MGUS) is a medical condition that has no symptoms. It causes the production of multiple copies of an abnormal protein in your blood.”

Basically, when you had your blood tests at your physical your doctor noticed the presence of an abnormal protein in your blood called the M protein. For many people this doesn’t cause an issue but over time if too much of this M protein collects it can create some problems. But it can take a very long time for this to happen and in some people nothing changes and no treatment is required.

Having routine blood work as your doctor suggested every 6 months is a good way to keep an eye out for any possible progression. For now, it may be fine to stay with your pcp. But if there are any changes in the future you may opt to see a hematologist or hematologist oncologist. They specialize in blood disorders and seeing them would be the next likely step to take. There are different risk types of MGUS which can predict the likelihood of the condition to progress. So for that reason, it would be valuable to be with a specialist.

Here are 2 informational articles on MGUS.
https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132
https://www.healthline.com/health/how-serious-is-mgus
I know getting a new diagnosis can cause a great deal of fear and stress especially when it feels so ‘out there’…like, is something going to happen or not!? The proverbial, “waiting for the other shoe to drop”. It doesn’t mean you live in fear from checkup to check up. Live life normally and try to stay away from Dr Google because that can just add anxiety. ☺️

Welcome to Connect! This is such a great community and I think you’ll find you’re not alone here. We have quite a few members with MGUS who will be more than happy to answer any questions you might have. You might enjoy exploring the 70+ other support groups we have in the forum and don’t hesitate to jump into to any conversation where your life experiences and journeys might offer support to someone else.
What types of things bring you joy daily?

@fayeraye Welcome to Mayo Clinic Connect. It can be scary to hear news like this, and pretty confusing, too.

My suggestion is to ask your dr for a referral to a hematologist oncologist. You want to have a specialist following you, specifically for the reason they have more interest and information. I would thank your primary for finding this. There is a lot of information out there you can look up to educate yourself.

http://www.myeloma.org is the website for the International Myeloma Foundation

Please don't go down the rabbit hole of Dr. Google! It can be real scary, and possibly lead you to misinformation.
Ginger

When they first found my M-spike, I immediately asked a very good local oncologist friend about recommendations for a hematologist. He was very adamant that I should go to one of the major medical centers in our area. He said that the local docs are used to dealing with less rare diseases like leukemia & anemias, but not so much with MGUS/MM. There are many subtleties to understanding how all of the numbers relate to each other and you need someone who can do that.

My biggest issue right now is my ferritin levels. I will get an iron infusion at this next visit. Beyond that, I seem to be asymptomatic.

My primary was the doc who sent me to a hematologist oncologist for follow up to my MGUS on my lab results.
I am now being followed up every 6 mos with bloodwork there.