Anyone else have Symptomatic MGUS?

Hey there Nancy1900, that’s wonderful - I imagine what you’ve described like a lovely picture and it all looks so beautiful 😀🌺
I would love to work with a research team to follow up on new directions for research using available longitudinal data retrospectively as well as follow life trajectories and stressors to see how this impacts on immune function in terms of disease development in immature cells. It’s already well known how stress can impact on emotional health - and this too feeds into how our hormonal selves operate and then interact with our tissues including bone marrow interactions.
My goal for example, would be to develop a hormonal inoculation to counteract the imbalanced hormones that are instigated by life stressors, which may indeed have positive knock on effects to a persons quality of sleep, which in turn would positively impact on overall health - the body could then heal itself once there was a break in internal hormonal / metabolic disruption. I had a really smart anatomy teacher when I was a student say: the body can alter function when there are less than optimal conditions - but only to a certain degree before disease processes cause cells to fundamentally change in their structure and function under this load. The key to finding lasting ways to maintaining the balance of function before disease changes a cell or organism is to break the pattern that creates fundamental changes. Look there, and not to forcing change while the cause or it’s perpetual process instigated inside cells is still present, or killing off a bunch of cells that are changing because of a trigger that still exists. I took this to mean we should be addressing the precursors and signs of disease before that precursor situation causes a permanent change. Like mitigating stress effects by changing the internal responses to stress (hence where my idea of inoculation for high stress hormones instead of fighting it with non-direct, symptom focussed actions or interventions comes from - it may be far from where current methodology sits, but I like to imagine as far out of the box as I possibly can🙂).
Anyhow, the current findings showing that noradrenaline impacts on plasma cells is extremely promising and I hope someone takes a deep look at all different possible parameters to address this imbalance 🙌🏻😀
I’m 50 now, and I have lost a lot of my former cognitive capacity due to memory and brain changes (can be seen on MRI of brain), so I would love to be a part of a team, but sadly I don’t think I have the smarts anymore to do so 🙂🌺
It’s very cold here, but beautifully sunny 😎
It’s lovely to chat, and I hope all this doesn’t put you off in chatting more 🙂

Totally agree with you. I don't like this wait and see, especially when everytime I turn around it is something else directly as a result of MGUS. It's like giving you a band aid, or less, when your arm is cut off. Sorry, but why tell me to report symptoms, and seek medical care, if they are going to do nothing?! It can get in your head, and heart, and somedays I just don't want to deal with any of it. BUT, I also realize staying positive, advocating for yourself, and prayer are so necessary. Best wishes and prayers for all here!

Yes; it’s perplexing and almost like a weird form of punishment! I’m being facetious here, but sometimes it does feel like that when - as you’ve described - you’re told to report, told it’s related to MGUS progression, then told nothing will happen until (in my case from my haematologist) you have overt CRAB. In the mean time, damage is being done. And there’s also the harm coming from judgement that it’s ‘only’ MGUS, and even with symptoms “you don’t have SMM or MM” so “there’s no need to think you have cancer” is what I’ve been told. Clearly, MGUS isn’t classified as cancer - I’ve been beaten like a drum enough on that point thank you very much, but the other symptoms that aren’t cancer are what cause me much issue, but due to MGUS “not being cancer”, by default the other symptoms are summarily dismissed. In my experience, they are not linearly correlated thus shouldn’t be considered such. But this is the faulty ‘logic’ I’m disappointingly faced with each time I see the haematologist…who demands I return for this little mind-game each 4-6 months. Setting aside being flippant, in my experience it is an otherwise unaware form of harm to MGUS patients directly enacted by medics that incorrectly associate the classification of cancer to the ‘acceptable’ experience of symptoms from plasma cell early dyscrasia; seems to me that some people have either a significant level of impact from monoclonal gammopathy due to its activity on the body, or they have a distinct susceptibility to that activity, or a combination of both factors, and this needs to be recognised, studied, and evaluated to determine if treatment interventions would be warranted to prevent damage due to the ‘non-cancer’ effect on tissues of MG’s.
I think it’s very relevant to discuss these currently peripheral but significant contributors to quality of life and adjunct harm to the body, besides the relationship to cancer, and I think this could also benefit the people with more advanced disease in terms of what I call the ‘collateral damage’ of MG’s in the body.
Just musing 🤔🙂

I have been diagnosed with MGUS for a couple years now. Asymptomatic so far. My initial thought was shock and wanted to treat it to get rid of it!
However my understanding is that the drugs we have available can cause more harm than good- and once we start chemo there’s usually never a break for the rest of your life.

But there are lots of studies out there on MGUS with the idea of treating it at the early stages so it never progresses. Maybe you could look into that?
I did a lot of research initially and found Dr. Joseph Mikhael with Honor Health in AZ. He does consultations for $300 and is involved with research, some with MGUS. He was also the chief (?) of International Myeloma Institute until recently.
Might be worth a look.
I sent my records & had a virtual appointment.
Good luck!

Hey there Leslie2121, I’m sorry to hear of your MGUS diagnosis, however it is very pleasing to hear that you are asymptomatic 😀🌺 Would you mind please sharing - if you feel comfortable to do so - your type? I’m IgG Lambda (low IgA).
I would agree that the meds directed at treating plasma cell monoclonal gammopathy aren’t ideal for a range of reasons, when it comes to approaching symptomatic MGUS, considering the volume of plasma cells to be targeted and that end up being effectively treated do not outweigh the side effects (both long and short term).
Having said that, it would be a pleasant approach to have some proactive care in terms of symptoms when they are causing some damage; for instance, in my situation I’m having high calcium levels, Bence-Jones proteins in urine, and peripheral neuropathy (amongst other MGUS effects), and so to have some help regarding these would be very much something to smile about 🙂
From what I’ve read (and I admit I’ve been a little lax on research review these last couple months due to another project), the research isn’t definitive or at the stage of general population application in terms of treating MGUS proactively to prevent progression (however, if this is not correct, please do feel free to correct me on that).
I’m very pleased to hear you found someone to review your case: may I kindly ask how it went with Dr Mikhael? I hope there were some helpful things that came from your appointment 🙂
I’m in Australia, and with our systems here it can be challenging to get a second opinion, and I’ve personally found it a challenge to access medical professionals outside of Au (however I’d like to say that to date I haven’t tried to contact Dr Mikhael, who may or may not see international patients🙂).
Thank you for your message, I really appreciate your kind suggestions.

I don’t know exactly all my lab results other than I don’t have any of the problems you mentioned ( the CRAB criteria) & my light chains are slightly elevated but ratio within the “normal range “.
I don’t know if Dr Mikhael takes international patients but I would think so since he collaborates with researchers around the world. He does a lot of second opinion consultations for reasonable amounts. He’s in Flagstaff, Arizona.
He was very kind & reassuring to me. He was happy to keep seeing me virtually every 6 months but I didn’t see the need. He didn’t recommend any interventions for me other than healthy diet/weight, exercise etc.
I’ve always wanted to visit Australia & New Zealand- hoping to this November.
All the best to you!

That sounds really reassuring and I hope your MGUS stays stable without symptoms 🙂🌺
I have a very low light chain ratio (way outside normal range) indicating very high lambda and very low kappa.
Here is an interesting abstract (edu institutional login is possible if you’re a teacher or student) regarding independent risks associated with high lambda: search - “High-Risk Myeloma Is Demarcated By Immunoglobulin Lambda Light Chain Translocations” (I’m unable to paste links, something about being a new member).
This is where I think the classification of MGUS/SMM/MM isn’t the primary consideration for risk; I think this is where the associated light chain assays, and other involvements (like lowered non-involved heavy chains, for instance) should have greater influence on how a person is approached in their care, based on these other factors being strong indicators of both symptomatology and advancement risk.
However I would be really happy to hear any thoughts - I’m still learning 🙂
It’s a worthwhile consideration to obtain a second opinion, and depending on the cost (in the instance it may be more expensive to be an international patient) it may be advantageous to consult with Dr Mikhael considering private practice here is a lot more expensive than $300 out of pocket for around a 10-15 min consult.
I’d be looking for more than generalised info regarding diet/weight/exercise as I make all my own healthy food from scratch, using raw/fresh/unprocessed materials (I have inflammatory bowel disease [colitis] so I have been researching and applying best practices in food selection and preparation for years to avoid malnutrition, and I supplement with specific and monitored additional nutrients at risk of low absorption), and my weight has increased in line with increasing bone pain (increased by an av. 8KG while the same clothing size has become slightly looser due to inactivity and resultant loss of muscle mass from intense bouts of bone pain); here’s some info regarding bone changes that can occur in MGUS: search - “Understanding Bone Disease and Fractures in Patients With MGUS” (I’m hoping I can paste links soon).
I love New Zealand - such a beautiful place, very worth the distance to visit, lovely people. Au has some nice places in terms of landscapes and some city landmarks and buildings in some of the cities throughout the country. I hope you really enjoy the trip 🙂🙌🏻

Hello again:

I think you’ve done such a deep dive on such a complex subject I don’t think I have anything to add- it would just be speculation.
I do want to get more clarity on what type of MGUS I have. I think it’s not clear yet as my M spike numbers are low and still evolving?

I’ve read somewhere that it’s not good when the uninvolved Immunoglobulins are low- meaning the involved/“bad” immunoglobulins crowd them out. I assume you’d be more susceptible to infections.

My appointment with Dr Mikhael was for a full hour by the way.

What’s the cause of your bone pain? Do you have osteoporosis? I discovered I did and took some heavy duty medicine to treat that after getting a compression fracture skiing. No more ⛷️now!
I think osteoporosis can be associated with MGUS.

I’ve moved from Dallas to Austin Texas to be closer to kids/grandkids and seeing a new oncologist in August to have here. I’m anxious to see what he thinks about everything.

Stay in touch- not too many people in the place we are in and I wish you well. Hoping our trip works out. 😎

I read that high sugar, meat diet was associated with MGUS and high whole grains, fruits, vegetables and fish associated with lower risk. Also obesity is a known risk factor.

When I was first diagnosed and going through testing I lost over 20 lbs due to not eating/stress - I also noted the light chains dropped by about 20%.
So I am not obese but could lose 10-15 lbs as I have since gained some back. So I’m working on that - something I can control.

Just an update, sorry no new clinical findings. It's been a long rough week, and thankfully, it is almost over. I have had dealings with a few snarky office staff, but at the end of the day I feel as if I have some satisfaction with a referral and appointment next week, (amazingly), to a new haemotologist. I had bloodwork to re-check the low platelets/high MPV, and also to confirm what I believe is RA. Blood work at an ER visit did confirm the RA but the nurse said "she" can't refer me until the blood work is back. I tried to tell her, that it was confirmed at the ER, and she just kept talking over me. It is very hard to get your concerns addressed, and taken care of, when you come across staff that conducts themselves in such a manner. I try to treat people as I would like to be treated and when they treat me as she did, I treated her the same way. Maybe I was wrong, but this is my health, not hers, and I don't deserve to be treated like that. I am sick and tired, of being sick and tired, and I don't tolerate nasty attitudes at all. They say when people treat you poorly, it says a lot about them, and not yourself. I wrote a long letter to my GP doctor, also mentioning neuropathy, that has gone from my feet to my hands and arms now. Very frustrated, and know that this is progressing, and can cause many serious, long-term problems, if not treated. Glad I am a survivor, and ready to stand up for myself, at any point, no matter the road blocks. I am also thankful, and glad to have connected here. I am learning a lot, and have found some answers. Does anyone have a taste bud issue? Everything, even sweet things, give me that sour reaction you feel in your jaws. This is a new symptom, and through research, I think it may be related to Sjogrens Syndrome. That autoimmune disorder, also has swollen lymph nodes. I have had swollen lymph nodes in my throat, which I have been asking about, for at least 6 or 7 years now. It is nice that I have finally, maybe, figured out some of these symptoms. I am hopeful that I will get answers from the new hematologist, referrals, and finally treatment for the symptoms I have been reporting, I jokingly asked in my letter to the GP if I would get a discount, or no copay for self-diagnosing. It really takes a lot to remain optimistic, and to fight for care, but at least I know tomorrow is a brand new day, and I have so much to be thankful for. Take care all!