Does anyone else have MGUS?

@juniperjgin
I lived in western South Dakota for much of my adult life and love the northern states. It is challenging to find good medical support in the rural areas, however, and winter highways are nothing to trifle with. It sounds like you’re making good progress and putting together a viable team.
In larger systems they have social work support. I am perhaps a little biased because I was a medical social worker prior to retirement, but I have great confidence in what social workers can do to make things easier for patients. I’ll give you an example…I’m on a plethora of medication’s for various problems and I wanted to start taking curcumin. I was concerned about any interaction that this may have with medication that I’m taking. So I sent a favorable curcumin study that I found to my social worker and asked her to pass it on to my PCP. Yesterday, Saturday no less, I got a call from an hospital system pharmacist who walked through the counter indications with me and suggested dosage. My physician didn’t do that… She kind of shrugged and said, “ OK if you want to try that that’s fine.”
It was the social worker who connected me with the right person.
I have asked for their help to expedite appointments, to get referrals processed in a timely manner and even to help work with the billing department to code properly, so my insurance company will be receptive.
You might consider utilizing this resource if one is available.
Thank you for your thoughtful response and I hope that you will continue to share your insights with our members.

I am sorry, MM is shorthand for the blood cancer, Multiple Myeloma.

I too have neuropathy; I am sorry yours has become debilitating.
Mine is just beginning to progress from sensory to some motor involvement.

If these symptoms led the physician to test for MGUS,
WHY are we not discussing the possibilities of neuropathy or treating them as serious symptoms that may be related to MGUS.

Yes.
We are most often told, “don’t be comcerned; the advancement rate is just 1% per year. MGUS is non cancerous and asymptomatic.”
(But we cannot donate blood with this condition. The reason being that our faulty blood plasma with its prolific monoclonal and unnecessary antibodies COULD trigger a malignant response in an otherwise “healthy” person receiving MGUS blood. Why aren’t we talking about this?” I have many questions that I tend to “feel” in my body as much as I may think them.)

Well, don’t you have symptoms?
Are they related?

I suspect so.

Depending on your age upon diagnosis, the likelihood of the MGUS actually progressing into any type of blood cancer is slim.

However, it is best to monitor because the progression rate is not necessarily steady or very predictable in reality.

The reality is simply that MOST, almost all, with identified MGUS, will die of other causes before the MGUS has a chance to develop into official malignancy.
(Simply not enough time with those statistics.)

Those are indeed the numbers.
There is no great reason to dread every blood draw as your levels are checked.
The statistics strongly support this.

Yet, those unanswered questions some of us have about the possibility of this condition being related to others bother my brain.

I wish you well!
I am hoping you see no further progression of that neuropathy!
Take good care of yourself.
With positive thoughts from the Northwoods of MN to you up in Canada!

This is my own conundrum with conditions and symptoms AND the presence of MGUS.
Chicken or egg?
This is an unanswered question!

But, recent research is starting to show that MGUS with the presence of some rheumatological disease may cause an increased likelihood of progression to Multiple Myeloma or lymphoma.
(Instead of 1% the statistics are higher, but less than 10% annually.)

I apologize but I do not have links to studies handy. I printed several and deleted them.

I simply searched MGUS and rheumatological disease, as I pondered this chicken or the egg question.

Several studies came up and they are quite recent, all in the last several years.

I believe we have much to learn!

Meanwhile, some of us are living the consequences of MGUS, in my opinion, not being entirely “asymptomatic” for some of us and in other ways than are currently recognized (such as “renal significance”).

What is happening in our bodies?

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?

What is MM? I was diagnosed by my neurologist with peripheral neuropathy about 2 years ago and referred to a hemotologist for further tests which led to a further diagnosis of MGUS. That diagnosis led to a bone marrow test in a hospital oncology department. Which really scared me. Luckily, no cancer found. I am re-tested for MGUS every 6 months.
I really know very little about MGUS which led me here to Mayo Clinic’ Connect plus other articles that I have found.
My hemotologist has never mentioned anything about other symptoms related to MGUS, only an increasing 1% per year of developing blood cancer- terrifying in itself.I have debilitating issues with my balance, as well as numbness in feet, legs and fingers, all supposedly caused by peripheral neuropathy.
Anything you can offer up in knowledge about either PN or MGUS would be helpful. Thank you! A Canadian bewildered by these diagnoses.

Patty,
That’s so true. There is a need within me to get to the root cause of at least SOME of the symptoms and disorders.
The not knowing and going with diagnoses for whole groups of symptoms is bothersome; the niggling tension of that is not a positive thing.

Sigh.
With my history, I have seen specialists in far too many divisions.
Securing doctors with
whom I can connect in just a few specialties in the coming year is my goal.
Thankfully, I have an active and helpful GI team at the UMMC, a great dermatologist (needed for digital clubbing, vitiligo and surveys for scleroderma and skin cancers (hopefully “safe” from melanomas, (rosacea too-want to watch eyes for involvement) who used to work well with the rheumatologist who retired, and have a good history with the infectious disease doctors too (rarely are my symptoms or growths related to anything infectious, however.
I will try to continue with Mpls Clinic of Neurology as I am scheduled to see a colleague of my former neurologist there soon (we did our undergrad work together in Morris. Fun! Small world.)
Having a history of care since 2010 at Fairview and the U of M helps.
Cardiology, pulmonary, ENT, endocrinology consults…
I have also seen many physicians in many of these same divisions at Mayo.
All have contributed to good overall care, a wealth of information, baselines, and referrals. I am deeply grateful.

The process of slowly finding the best physicians with that “right fit” in some of the most integral areas of care needed is overwhelming.

Also, we live very rurally in NE MN. It’s quite a drive to get to any of our major cities (Duluth/Superior are closer, but I have not established connections there.)

Even when “everyone”
and “everything” is IN place, just managing the scheduling, transportation help, appointments, billing, insurance, prescriptions, refills, and the navigation of procedures, surgeries, and recovery is more than a part time job.
When I am particularly ill or symptomatic, I don’t keep up very well. It’s not than I intentionally neglect any aspect, it simply becomes more than I can do.

So, adding the finding of new specialists, with the help of my new PCP (recently needed to make a change from my beloved former doc at the U of M due to medical costs as well as his imminent retirement), is stressful.
I am pleased to have found a more local physician who was happy to take on my complex case; she and I have been working well together.
When possible, referrals will defer to continuity of care. Then we have searched for specialists who visit local satellite clinics in MN or WI.
After we exhaust those possibilities, she at times has connections, but many of hers have moved on or retired through the covid era.
Then we both do some “reconnaissance”
work and find out where I might be seen and sooner than later.
But what a process.
And it’s so much to juggle.

My resolution in 2022 was to take a break and only do the bare minimum of healthcare.
Those were famous last words of course.

A healthcare advocate would be good! I become very weary.

It would be lovely to not need this help; I am, however, very grateful it is available.

@juniperjgin
Yes! I agree that somehow, all of these disparate medical markers are like a Rubiks cube and somehow connect to form a bigger picture. It’s a bit frustrating to me that the medical providers for the most part are not that interested in cause and effect but just putting out fires. So far, my fires have been, small ones, but how can one prepare your body for the long haul if you don’t know what the pitfalls are?
How are you going about finding new providers in three different sub specialties? Breaking in one new one is difficult enough. I can’t imagine working with three new physicians.

Absolutely.
A severe case of mononucleosis (EBV) at 18 may have triggered all sorts of “problems” for me.
Vitiligo surprised me at 22 when I was shopping for a wedding dress: “I have a map of the world across my chest.”
This was diagnosed but not treated. Over the years GPs checked my thyroid labs but I had nothing but anemia which was treated off and on as necessary.
Hypothyroidism wasn’t rearing its head until I was about forty. Since then it has been odd and difficult infections, often life threatening, requiring surgeries and hospitalizations, and the collecting of autoimmune disorders, a constellation of symptoms and rheumatological disease.
I wonder and research. There have to be more connections than we have unearthed or explained yet.

You bring up very important links about which we do know something but have not yet been able to treat well or fully understand!

A major problem is also related to women in chronic pain; we are literally the collateral damage of the medical system.

Thank you very much, sincerely.

I love to discuss these topics and they feel like the connections between life or simply survival mode to me.

(Chem-Bio pre med, but decided to teach and then raise/educate my children at home. So, fortunately, I already lived my greatest dream!)

Now I want to be able to really live and be as active as possible again; I am currently dreadfully slow and cannot imagine decades ahead with progressive symptoms and pain.
(Maybe I am just a wimp.)

leslie2121
Thanks for sharing some of the measures you take.

Yes! I definitely pay attention to diet (IBD UC and a homozygous MTHFR genetic deficiency have dictated some additional special needs for which I now supplement) and I have grown organic food and foraged for our family (and of course cooked it all from scratch) from produce, grains, legumes to meat, eggs and dairy for about thirty years with habits of fermentation and grinding grains and baking our own as a rule. Our children have carried on as this became lifestyle and they learned. I have needed a lot more help over the last years. Diet does not seem to be a culprit in disease onset or progression for our family.
Omega 3s are crucial and we avoid seed oils. Tart cherry and turmeric are part of my regular intake too. I also use dandelion roots and whole plant products as well as other traditional edible and medicinal plants to soothe what I can. It was just balsam bud collecting season; the salve created helps achy hands and feet. (Especially when all NSAIDs are off the table, for good reason.)
Natural diuretics and anti inflammatories are vital for my relative comfort.
Do any of you enjoy mindfulness practices, meditation, or prayer for stress reduction?
I also love to do my Qi Gong and Tai Chi for gentle but aerobic breathing exercise.
I am becoming better at remembering throughout each day that progressive muscle relaxation is an excellent break when I feel stress in the body. I try to remember to use breathing exercises as well to slow the CNS oor target the autonomic nervous system’s reaction to stress.
Seeking fresh air and optimal sunlight is a goal for every day too. I like to live close to the seasons and the earth.
Being in the water provides the very best relief for muscular-skeletal pain as well as resistance for muscle building. The water work also promotes restful sleep.
All summer long I will end every day that I am able enjoying open water swimming.
This works wonders for me in many ways, but I need a buddy these days. (My son most of the time.)
Do any of you find relief in the water?

I have to be careful to not become over tired or “wired” with too much pain; in that state I am unable to sleep until relaxation and pain relief finally comes.
It’s a difficult balance to maintain.
Is this kind of “over done it” reaction of the body common for anyone else?
(I will need a recovery day or two of just sleep for every special activity or big appointment day. If I fail to rest I end up in worse shape than an over tired toddler!)
Ah.
Another looonngg chapter.
I am doing all I can and know to manage my health and well being.

There is grief that comes with the continual deterioration of health.
Sometimes it is not in our power to make things better.

Acceptance becomes the necessary move.

I hope each of you can find acceptance in whatever circumstances you face. This life is a tightrope walk between hope and contentment.
Out of that precarious place we can practice gratitude and joy in living.

Thank you for your encouragement, Ginger!
It is wonderful to know you are a survivor of MM! That’s a victory of a lifetime and I wish you well as you move into the future.
I do keep symptom journals and the details have helped physicians diagnose and treat when labs and testing were not providing evidence of disease.
This is such an important habit; patients must do all we can to advocate for our selves. The journal can be difficult to keep when sickness is intense, fevers run high, and exhaustion is reigning. But I find if I jot notes I can usually reconstruct back into the journal well when able.

Honestly, I am spurred on by your story of being an overachiever!
My brilliant neurologist, who recognized the MGUS and has always pushed me to “demand” good care and oversight, recently asked me to request the oversight of a hematologist, after a decade without such a specialist, just testing ordered by my PCP. He has been concerned about the fluctuation of the M spike and explained to me that quite often the numbers go from low to the hundreds in record time, just like you described. He also sights my younger age at Dx and I am sure he has been considering the rheumatological disease impact on monoclonal antibodies that has been seen in more recent research. He thought a hematologist was appropriate for my care because we “need someone who knows the questions to ask and the best additional testing to order.”
After referrals and two dreadful appointments with hematologist oncologists who basically told me everything I already knew about the statistics around asymptomatic MGUS and to add insult to injury told me I had been, in their opinions, over monitored and over tested in the past and would recommend serum protein electrophoresis labs every three years for follow up, I feel discouraged, frustrated, and a bit reluctant to keep advocating for care.

I am sure these doctors are wonderful with their cancer patients and provide excellent care. But they made me feel like an invisible 52 year old hypochondriac. And that’s simply the sad reality. I don’t just keep symptom journals, I take a lot of notes during appointments.
It is exhausting to find the right physicians, especially when it becomes necessary to start over.

I am in search of those who take genuine interest in a complex patient and have a curiosity about what might be happening across systems and creating body wide havoc, so to speak. I also need someone who will listen and look at a complicated history and believe me.
Those are the gems of the medical world and it has been physicians such as these who have helped to save my life multiple times and rescue me when this body was failing and defying me.

Thank you for listening, anyone who has read all the way through this diatribe. This is simply another rough place along the way for me personally.

Bless you.
May you find yourself healing and experiencing positivity and victory over your own illness or that of your loved ones. 🩵