Digital Infoday Session: MGUS: An Overview

[@Maisie343]

I have just been diagnosed with MGUS, i also have scoliosis and spondylitis so used to back pain. I am feeling fatigued i have had 2 recent kidney infections this is how MGUS was discovered through the blood tests from kidney infections.

[@alisontunny9362]

I have MGUS and it’s been responsible for two bad vertebrae fractures.

[@silvanadasilva7341]

I was diagnosed with MGUS 7 years ago, and have been monitored with blood test every year to check the level of paraprotein. The protein it is always 5 - 6 but recently in February 2023, dispute not being anemic, calcium level normal, kidney normal, and small lesion was found on my rib, good news , PET didn't find lesion on other parts of the skeletal structure. I have just had a biopsy done on the lesion and waiting on results. It is right that the level of paraprotein can vary and go up and down. I am positive that it might just be carry on monitored with blood tests. I have multi-nodular chronic thyroid condition,. I wonder if that can make MGUS worse? Do I need to remove my thyroid and will it change the MGus? I found this presentation very important and reassuring and very informative. It is good to know that there are several treatment and that blood test monitoring is very important to keep an eye on things and may be pick up a possibility of MM in year stage if it cames to that. I had Covid twice 2021 and 2022 and after the Covid 19, developed a nagging pain on my left side of the upper body in the ribs. It was a sharp pain it was terrible when a breath and coughed . And first time I had the Covid I couldn't.breath a ND also couldn't not walk and symptoms developed very fast, join pain and rib pain. I thought it was the Covid symptoms that lingered for about 3 to 5 weeks.! That was when they have found a lesion and I have been checking. I have also learnt by watching few American videos that even after the treatment the time of remition is very long 5 to 20 years and that there are a range of treatments. Thanks so much for this valuable information.

[@elainerobertson1988]

Excellent.

[@EL-yi6df]

I'd like to know if there are different definitions for "Free light chain (Kappa) amyloidosis" vs. "Free light chain (Kappa) MGUS"? Thank you.

[@colinheaton6934]

Mgus does give you bone pain trust me

[@silvanadasilva7341]

In 2021 I started feeling pain on my ribs with COVID and 2022 again COVID a pain on my ribs and it was found that the paraproteina was raised and I was diagnosed with myeloma but there was a lesson on the ribs.i believe it is taking longer to diagnose patients.

[@silvanadasilva7341]

I was diagnosed at age 50 not anemic, I went in to have my thyroid check ups. 8 years later it turned into myeloma

[@thomasfraser9072]

Were you Stationed at Camp Lejeune and at what year? Did you make you claim against the Navy? If not you can fill out an official Court Papers you find on the internet as I did. it is easy and simple but you must include MGUS on the paper as well. You must decide for yourself what you think your claim is worth. I personally put 250 thousand dollars.

[@jessicabellone913]

I was diagnosed with MGUS back in 2020 because I had a series of mysterious neurological symptoms kind of suddenly. Severe Muscle weakness, unable to stand or walk for 2 weeks at onset of symptoms. Some seizure like episodes, muscle twitching and spasms, chronic hiccups/diaphragm spasms, full body neuralgias etc. I have had so many tests done and seen so many specialists and no one can say why this is happening. I’m followed by hematology/oncology, neurology and primary. I’m desperate for answers and it was suggested I reach out to the Undiagnosed Network in Maryland which is part of the NIH. I would greatly appreciate anyone’s input as maybes it could be helpful to me.

[@TheLisajoyce]

Hi, how are you doing now? I’ve just been diagnosed

[@silvanadasilva7341]

Yes it does

[@jjgallag1]

Acknowledging that you made this comment 11 months ago, I’m wondering if you’ve been tested for Lyme disease? I was diagnosed with MGUS four years ago, shortly after being diagnosed with Lyme disease. Lots of neurological symptoms. A recent research study found a correlation between Lyme and MGUS.

[@LisaRichards_123]

I have mgus and peripheral neuropathy. It’s awful trying to sleep. You feel like you’re being stabbed with hot pins, and I feel all kinds of weird sensations in my feet and hands.

[@elainerobertson1988]

Low Dose Naltrexone has been mentioned as a possible treatment to slow MGUS progression. See LDN Research organisation.