Does anyone else have MGUS?

I think that you have a rare gift - to see a sunnier side! Thank you. Best wishes

I hope they can treat the amyloidosis for you, and you can improve 🌺

@lauraz and @carolesg I find the falls are getting worse and more frequent, and always think it would be nice to have an intervention to prevent the progression of the non-cancerous symptoms associated with this disease, considering that it’s cancer is not the problem, the problem is the remaining issues that arise due to the existence of paraproteins and the resultant effects.
If there was something not chemotherapy related that could impact this part, then that would be amazing. I think it’s not good enough for the medical profession to watch people who are evidently (via test result as well as symptomatology) symptomatic and simply shake their head and brush off their hands saying there’s nothing that can be done - to me that’s like saying to someone we don’t have a treatment for what’s causing you to have this heart problem, so we are just going to ignore it and pretend it doesn’t exist by calling it heart disease of undetermined significance. It may incapacitate you, yes; but that’s not our problem. And if you continue to faint and have significant falls, that’s also not our problem.
It’s kind of barbaric in some ways to be not actively addressing the non-cancerous symptoms when they are altering body function and resulting in harm to the person, with investigation of other forms of treatment and active research into getting rid of this what I believe to be ridiculous nomenclature of wishy-washy-turn-a-blind-eye ‘undetermined significance’, and finding why some people have changes in internal body function because of the non-cancer effects, then naming it accordingly..just like how there’s the accurate name for when MGUS starts causing kidney disease, that is called MGRenalS.
Yes, there is valid reasons not to give cancer specific treatments to someone who is not classified as having overt cancer to the volumes that warrant cancer specific treatment because it’s going to create significant side effects while not killing enough cancer cells, but there is a huge opportunity to study and develop interventions discrete to those sub aspects of the disease that cause changes in the body that aren’t cancer. To continue to perpetuate the mantra that those who are symptomatic but not cancerous should just suck it up and be thankful they don’t have cancer is like saying to someone with a fractured arm suck it up and be thankful it isn’t your back, while sending them home because you’re not going to treat them for the suffering they are currently going through.
That is quite unacceptable and significantly cruel in its arrogance.
Any time a person is having objective changes due to disease processes that then affect their quality of life, there is an onus on the medical profession to acknowledge, investigate and find help for that cohort of people.
Imagine if a car developed a particular problem and all mechanics simply said “oh, that’s engine failure of undetermined significance - it could have critical failure tomorrow, or it may last another 10 years; either way, I’m going to ignore it and you just keep driving and bring it back here for me to check the dip stick each 6 months”. I would spin him and put my boot in his backside!
You can see my point - said rather emphatically and with some humour - however the underlying seriousness of people’s suffering being dismissed, minimised, and thus not adequately addressed needs to change.

I hope this link works: https://connect.mayoclinic.org/discussion/does-anyone-have-any-info-on-mgus-treatment-or-risk-of-progression/?pg=4#comment-963324
This is a discussion where we talked a bit about progression, and what it may indeed mean on an individual basis - I hope you find it helpful.

@pmm I definitely agree with you. And if you all would allow me to relate my story here, you might see my point of view.

In 1988 I was diagnosed with systemic lupus, and they have evaluated it to be "mild" as far as presentation. I had the classic symptoms, and went through more than 6 months of testing, narrowing down what was going on. Since before that diagnosis, and ever since there has been pronounced high protein values in my urine, no matter the test. In the ensuing years the following additional conditions have been added to my repertoire: gout, fibromyalgia, arthritis [osteo and "general"- whatever that means!], a very rare autoimmune/ideopathic kidney disease [not associated with MGUS or multiple myeloma], MGUS that morphed to SMM in a year, that then advanced to multiple myeloma a year later. Add in the now-daily dialysis for end stage renal disease caused by that kidney disorder. "Over achiever" is how I classify myself, and feel my depressive disorder has been well-earned [and under treatment, by the way].

We can choose to dwell on the what-ifs in life, or we can get onto living. I have chosen the latter. While there may well be supportive treatments for MGUS, often times a person is dealing with multiple heath concerns, and treatment overall has to take all factors into consideration. We do not want our medical team, and that includes ourselves, to address one issue and put aside other things, with the possibility of throwing everything off-balance. And believe me, that is very easy to do. Surrounding ourselves with medical experts who can communicate with you and each other to offer the best pathway is crucial.

At the moment I am on a "vacation" from chemo for MM, because my body was getting so beaten up with everything. It's a matter of time before I go back to that regimen, but for now, it is okay by me. Do I play the "what if" game? Not so much anymore. Do I make an attempt to enjoy each day and make a difference to myself and others? Absolutely.

Off my soapbox, now,
Ginger

Thank you. I hope so too. So many things are "wrong' with me, it's a bit of a kunundrum. Somehow i do believe they ARE tied together. ANYONE ELSE?

I would like to both hug you and shake your hand. My sentiment, less the booty kicking, exactly.
When I suddenly began having a runny nose that just would not stop running it would start by itself and run so quickly that I didn't even have time to get a tissue out. My doctor told me I was just becoming my grandmother. That's a quote. He did however preface it with a little picture he drew for me in his mind of my grandmother pushing her tissues of her sweater sleeve.
The thing is no one can know what one is going through unless they've gone through it themselves. I am such a conundrum and a myriad of oh Scrabble diseases that no one wants to take me on as a patient. But the insurance companies have made it impossible for doctors too do more than see you clinically and then push you out the door if you do not fit into their paradigm.
I don't know that we have any power to literally change the mechanics of what has become a veritable monster.
I found out a couple years ago that there is some kind of invisible list one through four I believe that determines what an EMT or a doctor should do for you if you were unconscious and alone. One being give full treatment and four being give no treatment.. I just found out I'm number three. Who put me on this list or where the list came from or where you can find the list is beyond me. It was the Cleveland clinic that informed me. I don't know that they will ever piece all of this together, but the more I have to explain it the more I am educating others.. I hope anyway.
A few good doctors are making a little headway and looking for patterns in generational groups with similar issues. I was told one commonality with gastroparesis is dyslexia. Never knew my dad had it until I was in my fifties. Also there are types of dyslexia that describe my vision where no doctor could ever tell me before what was happening to me why letters were splitting in half or bending or twisting. Sometimes we learn things on our own and sometimes we learn from places like this and sometimes we can just come here to commiserate or bring some hope. I'm hoping with all my heart that insurance companies will stop dictating to doctors what they can and cannot do. And that more empathetic doctors will turn up on the horizon. But the more we speak out the more we educate in the more we learn. Thank you for your post

Absolutely. We are just a bundle of chemicals, tissue, bone and energy. When it all works right it’s a beautiful thing.
Hugs, Ginger.

Patty

No worries 🙂
Yep; conundrums abound I believe. I think there may indeed be a relationship between currently not medically known to be correlated conditions, and I say this on the face value that the immune system is extremely complex, and has a unique function and action within the body, including being able to protect or destroy other tissues, so if there was some significant research into how conditions are possibly related then I think that would go a long way towards helping people who have comorbidities manage these other conditions.

You've raised significant points, including the degree of response paradigm. Here in Au, mine is classified as 'do nothing' because I have no relatives so its deemed I don't need to be around to look after anyone; like that is all a woman is good for these days, when she is around 50. Thanks for letting me know my place in the world, O masterful men of medicine; what would us wee women do without your worldly judgements? ..ahehe.
Indeed there are many correlations and commonalities which should be given more time, effort, and money to research, because if this was done, and understood, lots of time wasting, dismissiveness, and clinical back and forth-ing could be avoided, I think.
And one of the most effective ways to get this done in the modern age of patients being subjects in a schematic created by insurance/social medicine systems that only care about bottom lines is to advocate, and advocate strongly, for proper medicine and proper care.
I do that here in Au, nationally, in my state, and at the state funded research universities in Au (for better care, better research that is focussed on clinical outcomes - benefits patients and not just confirms science, for homelessness change, for housing market change, and to help those who are in crisis and distress).
In my down time I volunteer for crisis support organisations (chat/text lines) to help people who are very distressed and thinking about distressing actions, to help them manage in the moment, and to then build skills and tools in resilience for when they are feeling distressed in the future. No doubt helping someone in some way is super rewarding, however when helping yourself with your own advocacy by holding the systems and the practitioners accountable to their best ability in delivery of care, now that is also extremely rewarding.
Educating oneself on how to effectively advocate in a clinical setting is very helpful in todays clinical climate, and there are some online resources for this.
I hope you have a lovely day, and its been great chatting so far about this topic 🙂 Thank you 🙂