Does anyone else have MGUS?

I was diagnosed with MGUS 5 years ago as my IgE was 90,000....the only patient my oncologist has ever had with these crazy numbers. Am doing fine....78 yrs old, female....and being checked once per year. Cannot understand why I continue to receive such elevated IgE numbers. Any ideas?

@cdeldeo IgE is an immunoglobulin that often is related to allergies. It is very rarely associated with MGUS. Have you had any testing by an immunologist regarding allergies? I recall a long time ago, my mother going through allergy testing, and the only thing she was not allergic to was her cat!

Also, https://www.msdmanuals.com/en-kr/home/immune-disorders/immunodeficiency-disorders/hyper-ige-syndrome#:~:text=Hyper%2DIgE%20syndrome%20is%20a,%2C%20lungs%2C%20or%20other%20organs.
Ginger

I went to allergist at Mayo after the IgE was noted to be so elevated..but do not have allergies. I did grow up near DuPont plant years ago and wonder if the fumes from that are in anyway connected to my blood work. It is a mystery...and every year my IgE continues to be in a very elevated range.

The articles you sent were very helpful...thank you so much. Christine

I have been diagnosed with MGUS this last month. I also have diabetes, heart failure, pulmonary fibrosis, stage 3 kidney failure, all from treatment I received in the 90's for Hodgkin's Lymphoma, stage 3. My biological father died of multiple myeloma, and I had 2 aunts on my Grandmothers side with Hodgkin's Lymphoma and some type of lukemia. My doctor says not to worry and it will be checked every so often. I do have some weird symptoms like a neurological jerking and burning all over my body at times that I can't explain. Just wondering if anyone else was dx. with MGUS after treatment for Hodgkin's?

I was diagnosed with it but never had Hodgingkons lymphoma and I was told my blood would be checked altho never seems to be. I think I have peripheral neuropathy in my hands and all my bones ache I had a brain tumour found incidentally but it was excised no chemo

Welcome to Connect, @joyelizabeth. It’s interesting that you were diagnosed with Hodgkin’s lymphoma but never had it. Does that mean your diagnosis changed?
This would be a condition that requires monitoring with blood work. It might be something you need to be more proactive with calling your doctor to have a checkup and labs run to check to see if there’s any progression.
People with lymphoma can develop neuropathy and bone pain so I’d really encourage you to check in with your doctor.
Are you working with a hematologist?

Hi @anitalouise45, late effects of treatment for Hodgkin's lymphoma can develop many years, even decades, after treatment and may include getting a secondary cancer. It sounds like there may also be a family diposition to blood cancers.

You have a number of chronic conditions that require constant monitoring. Does your GP monitor everything or do you see specialists?

I was diagnosed yesterday 2-15-24 with MGUS, the Hematologist/Oncologist just wants to watch it for 6 months and see what happens, I have had a kidney biopsy for protein in Urine and Blood work is all they have done. Is this the protocol for MGUS is just wait and see ? Any help would be greatly appreciated ! My Dad had Multiple Myeloma before he passed.

@rhondalee89 Hello, Rhonda, welcome to Connect. It’s a lot to absorb, getting a diagnosis such as MGUS, isn’t it? I remember having so many questions and feeling overwhelmed. Then the doc explains that typically, you will be monitored at intervals to ensure that that M paraprotein in your blood doesn’t indicate that you are progressing from MGUS to Smoldering Multiple Myeloma or Multiple Myeloma. It was a relief to me that most MGUS patients will not progress to either.
Depending on what information your hem/onc doctor gleans from your blood analysis, he or she will develop a strategy for monitoring your health. Skeletal surveys, 24 hour urine analysis, regular blood tests and bone biopsy are some of the diagnostic tools he or she may use. The frequency of this testing will depend on how high a risk for progression you carry. It’s definitely a conversation worth having with your physician to get an explanation of the information he/she already has and plan for continued surveillance.
Try not to consult with Dr Google. Information is good, but first speak to your physician so you can weed out extraneous information that does not apply to you. If you don’t feel that you have a handle on what your physician is thinking, I would recommend that you not wait six months to have that conversation. Ask for an appointment or telemedicine consult with your physician, write down all your questions that you’d like to have answered, and make sure you feel comfortable with the plan.
If you’re like me, you will want to take some action to improve your health. Watch and wait seems like a benign response but remember, you have not been diagnosed with cancer.
Even with full-blown multiple myeloma, the advances in treatment methodology have improved tremendously in the past decade.
Have you found your physician is receptive to your questions and willing to explain your lab results to you?
I found this Mayo Clinic information helpful.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
Let us know how things are going for you. Wishing you the best possible outcome.
Patty