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My own journey with MGUS started in 2014 when my neurologist recognized the ratio between proteins in bloodwork was “off” and ordered serum protein electrophoresis for me at the age of 43.
Though my IGg Mspike (κ light chain)
and bone marrow % have remained low, my numbers fluctuate a lot. Sometimes doctors have been hopeful that it will burn out and disappear. But then it will rise again, and maybe a few months later rise some more and then drop the next time we check.
They call this asymptomatic.
My intuition about my body and the myriad autoimmune symptoms/
manifestations and overall poor health, frequent difficult infections (and even with something like raging kidney infections requiring surgery did not create a rise in white blood cell counts), et cetera lead me to believe there is more happening in MY body.
I was diagnosed with vasculitis in 2022 and with IBD ulcerative colitis in 2023 (didn’t have typical symptoms; colonoscopy revealed disease.)
It is difficult to be be told or continue to read that this has “undetermined significance” and is asymptomatic when I am sick, fatigued, running fevers, aching, “crashing” after activities, and experiencing sensory neuropathy or numbness in hands, wrists, and feet, lower legs and have several autoimmune conditions.
SOMETHING insidious is going on and so far my blood work doesn’t show much beyond the MGUS and low levels of markers in several autoimmune disorder categories and that treatment with Synthroid relieved/improved
many hypothyroidism symptoms.
I wonder all the time what is really happening.
The work I was pursuing with a rheumatologist and dermatologist came to a halt with the arrival of SARS Co-V2 as “elective” appointments were kind of shut down.
Since then I lost my rheumatologist, neurologist, and hematologist with whom I had developed rapport and trust.
Starting over is difficult. So far I have not found great help in the specialist dept.
I have been reading some research regarding the effect rheumatological and autoimmune disease have on the progression of MGUS to MM or lymphoma.
(Risk statistics are increased.)
What I want to know is if there is something about MGUS that triggers the onset of these other, sometimes very debilitating, diseases.
How can a condition, MGUS, which even at a low level changes the chemistry of one’s blood, NOT affect the body? Plasma and blood health work to regulate so much of our health and functioning.
I post this not to frighten others nor to complain. It seems there is so much that is unknown. I just hope to find physicians willing to work on the puzzle pieces with me.
I wish you all good health and send virtual hugs with positive thoughts!
Replies to "My own journey with MGUS started in 2014 when my neurologist recognized the ratio between proteins..."
And I think you are right that there’s a connection but we don’t know yet what it is or how to fix it.
You know your body best. Can you tell what helps you?
Have you tried anti-inflammatory measures? Such as diet, sleep and stress reduction?
I’ve added curcumin and tart Cherry extract and it seems to have helped. It’s lowered my FLC - but could be a coincidence. I’ve not had any side effects so will continue those. Also omega 3 capsule daily.🤷🏻♀️
I’m so sorry you weren’t able to have continuity with your original doctor team. That’s frustrating and adds to your stress level, definitely.
It seems there’s an overarching disregulation in our bodies that is manifesting itself in different ways, and systemically. 🤔
@juniperjgin Yes, we know our bodies best. And what we present on one day may not be the same thing as we present on another day. Variances in temperature, our own moods, and other health issues can combine to pronounce or retard symptoms seemingly "at will". No wonder it can be difficult for our medical team to pinpoint what is going on. As someone who had MGUS that morphed into multiple myeloma seemingly in record time [they tell me I am an overachiever!], I also deal with comorbidities that can really affect how I feel on a given day, or even my blood results.
Perhaps keeping a journal of your symptoms, how you feel on a day-to-day basis, activity level, etc. will help both your and your doctors to come up with ideas of what is going on. Do you think that is worth a try?
Ginger
I was diagnosed with MGUS last summer concurrent with a thoracic vertebral compression fracture. In January I developed Polymyalgia Rheumatica (PMR). I wonder if MGUS is the chicken or the egg. How about others?
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I agree that it’s a complex interaction between our immune system and so many other things that can cause symptoms and we don’t know yet what they all are. I remember first learning in college (nursing major) about the many diseases that are now understood to have autoimmune connections such as type 1 diabetes. How viruses can trigger autoimmune disease!
I’ve read in studies how Covid ( both infected and even healthy but vaccinated people) can have similar effects of inflammation that can resolve or sometimes persist.
That antigenic stimulation (again, either from viral or bacterial infections, and even allergies or vaccinations (rarely) might trigger things to get mistakes in coding. Then lead to different autoimmune disorders especially women tend to have more.
My very healthy mom was diagnosed with systemic scleroderma in her late 70s- no prior history for her or our family.
I think stress has a big role in our immune system too.
Bottom line we do what we can to be mentally and physically healthy and hope for the best!