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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I was diagnosed with Mgus. I was told I just need to be followed up in a year. I have since had alot of new symptoms that might be related.

A MyMyelomaTeam Member asked a question 💭
Pittsfield, MA

I have back spine and neck pain. I also developed a rash that has spread to other parts of my body.A few days ago I developed a strange blister on top of my ear and yesterday I noticed a large lump that is hard on my neck. Should I tell my ongologist, or go to a dermatologist or an ENT ?

January 5
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Reactions
A MyMyelomaTeam Member

Rochelle,
Always talk to your doctor about any new symptoms. A Hematologist/Oncologist who is a MM Specialist is who you want to monitor your MGUS. A MM Specialist will know what tests to order and what treatment plan is best. My first 2 Oncologists had no clue. Have you had a bone marrow biopsy yet? Lumps on your neck could be from lymph nodes. The Multiple Myeloma Research Foundation have counselors to talk to and a list of MM Specialists. HTTPS://www.themmrf.org/
Paula🌹

The MMRF | Multiple Myeloma Research Foundation
The MMRF | Multiple Myeloma Research Foundation
https://www.themmrf.org/
January 7
A MyMyelomaTeam Member

Most people are tested every 6 months for MGUS not 12. Your symptoms don't seem to me to be Myeloma related but I am not a doctor. I have had MGUS and Smoldering for more than 3 years now so have had a lot of issues answered that turned out not to be Myeloma related although they were mostly bone related. Best of luck.

January 7
MyMyelomaTeam

Should you contact your oncologist about new symptoms after being diagnosed with MGUS?

Yes, you should definitely contact your oncologist right away about these new symptoms. While MGUS typically doesn't cause symptoms and is usually just monitored, the symptoms you're experiencing could indicate that your condition is Show Full Answer

Should you contact your oncologist about new symptoms after being diagnosed with MGUS?

Yes, you should definitely contact your oncologist right away about these new symptoms. While MGUS typically doesn't cause symptoms and is usually just monitored, the symptoms you're experiencing could indicate that your condition is progressing.

The symptoms you should watch for that might suggest MGUS is progressing include:

* Bone pain (which could explain your back, spine, and neck pain)
* Nerve pain
* Unexplained bleeding or bruising
* Swollen lymph nodes (the hard lump on your neck could be a swollen lymph node)
* Tiredness
* Loss of appetite
* Unexplained weight loss
* Night sweats

Your oncologist needs to know about these changes, especially the bone pain and the lump on your neck. They can order appropriate tests to determine if your MGUS is progressing or if these symptoms are from something else entirely.

While the rash and blister might warrant a dermatologist visit, start with your oncologist first. They can coordinate your care and determine which specialists you need to see. Don't wait for your scheduled follow-up appointment in a year - these new symptoms require prompt evaluation.

January 5

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