Anyone else have Symptomatic MGUS?

Hi Susan, I’m sorry to hear you’re also not being heard, and I hope you have better outcomes with a new haematologist 🙂
My inner cynic draws parallels: if heart attack symptoms were systemically ignored by the medical community and people experiencing them were consistently put at greater risk of heart damage due to their symptoms being repeatedly dismissed, there would be a totally different outcome for those medics, however symptoms of monoclonal gammopathies that out a person at risk of significant harm both directly in terms of cancer and indirectly in terms of secondary harm to tissues (amyloidosis, neuropathy, anaemia, viscosity changes that result in brain changes, high risk of fracture and spinal cord compression, etc) are acceptable for a person to experience for years without any gravity assigned to their potentially devastating outcome.
The discrepancy is just boggling as to how this kind of behaviour exists within a community of practicing professionals tasked with the care and decision making over the lives of those living with these symptoms.
I believe the enforced ignorance of the existence and impact of symptoms needs to stop, and symptoms are taken seriously - just like those attributed to a heart attack - considering the outcome is just as serious for the trajectory of a persons life.

ChefT, I tried to include some scholarly articles referencing research for nutritional supplementation of r-alpha lipoic acid (shown to support neuropathy in various metabolic and other mechanisms), and sunflower lecithin (shown to support brain cell integrity), however I received a message blocking my post due to new members being unable to share links for an unspecified timeframe.
The article titles are: Insights on the use of a-lipoic acid for therapeutic purposes (doi 10.3390/biom9080356), and Top 8 sunflower lecithin benefits and uses, published on Healthnews dot com, dated April 28, 2023.
I found them informative, and the references supporting the article are included at the end.
I also am investigating other nutritional methods of supporting the unique symptoms that accompany MGUS/SMM, with other quality and researched nutrients, and if I find further info I’ll list it here (hopefully I’ll be able to share links soon).

Appreciate this. I’ll look into these.

Hi mguspixi25,

I am doing well. As I mentioned it is more common in folks my age. And it is a waiting game at this point. But it is good that YouTube has so many good doctors out there that are very helpful. As I said Dr. Durie has many videos. Brian G.M. Durie, MD, is a hematologist from Scotland originally and has been in the US for a long time. He is very well known. The internet is a great source of information and studies. There are many studies on MGUS.

I have access to good doctors. And my family practice doctor and my hematologist took it seriously from the beginning. I was diagnosed in August of 2022.

I am sorry that you don’t have access at this time to participate in studies. I hope that will change soon for you.

There is currently no treatment for MGUS. Just living a healthy lifestyle and mitigating stress in my life are both great options for now.

Take care.

Nancy1900

I’m glad you’re doing ok nancy1900 and thanks for the additional info - I really appreciate it.
Thank you for your kindness, it’s really nice to feel supported, and your words do make a difference 🙂
Yes; the trial in Melbourne Victoria was to see if treating high-intermediate risk MGUS would prevent progression to SMM/mitigate symptoms. It would’ve been awesome to be included if it wasn’t for the ineptitude and apathy of the public health system I’m currently dealing with. Not all staff are this way, however the public system here is not geared towards helping patients unfortunately, so those excellent staff inevitably end up leaving through sheer frustration, heading for private practice - which sadly widens the gap between appropriate and timely care, and what you get when you have no access to the private systems and are left to the public.
Not to worry, these systems of inequality have been in place for centuries in one form or other, and so it’s nothing new.
A healthy life really does help, and it’s an aspiration I still aim for as much as I can 🙂

Dear mgusPixi25,

I have heard a little bit about your health care system over there. Ours has issues as well. But this I know, while you cant’t change the fact you have MGUS, and maybe you can’t change where you live, you do have a great big crowd of folks who understand and will support your journey. As we already alluded to, you can eat healthy, exercise and don’t forget to have a good laugh once in a while. I can usually find a little humor every day. And remember sleep is so important to your healing. Treat yourself to a good nights sleep often.

There are organizations like HealthTree here and the Multiple Myeloma Foundation that maybe you could also sign up with on line. With the internet we have so much more access to latest developments and such.

Take care. Sleep well. 🙂

Hi there Nancy1900, Yes unfortunately the systems that are designed to help aren't as infallible as I'd like.. Are you in the States? I have some friends in the US and they have described how challenging it can be to get help, get medicine, and get tests. I am very pleased to hear you have access to a good level of care 🙂
That is an excellent point you've made regarding the community of people who understand; this is something I am also very thankful for indeed! 🙂
And good rest, as well as feeling happy, are integral to the function of the immune system..I was reading some research some months ago regarding how noradrenaline in particular impacts on plasma cells and monoclonal cell growth and multiplication (the 'flight' hormone).
Sleep is an interesting aspect of illness; I was also reading that in Stage 4 sleep, the immune system is highly active, and working to control other aspects of immune dysfunction like autoimmune diseases (Stage 4 is the deep sleep cycle, characterised predominantly by delta waves, if I remember rightly). Bone and other pain can disturb sleep enough to limit the cumulative time spent in deep sleep - another contributor to health outcomes related to immunity...could chronic pain and its impact on sleep also be a contributor to immune disease is the question I was left with after reading that particular piece of research 🙂
Thank you so much for sharing those additional resources; I really do appreciate it very much 🙂
I hope you have a great day tomorrow!

Dear mguspixie25,

You sound like a person who loves researching things. That is great! I struggle with it. But I do glean enough from specialists on YouTube and some articles geared toward the layman.

Yes, I am in the USA. Pacific Northwest.

Be as well as you can be. Adjusting to a new “normal” has been challenging at times. But I think I have got this now. It has been less than a year. But letting go of it on a daily basis, and not worrying about what I can’t change has been helpful mentally. I was pretty fearful at first, but now I know that I shouldn’t fear it, just watch and wait, stay informed, and enjoy this good life God gave me.

Hey there Nancy1900,
Thank you; I do indeed enjoy reading research and making sense of how the puzzle of MGUS fits together.
I’ve been wondering if MGUS and other immune stem cell disorders are impacted by gut microbiology, hormones regulated by sleep, and genetic predisposition and cellular susceptibility to a plethora of environmental exposures..all over a factor of time. I’m wondering if maybe the condition is really a symptom of something else that currently isn’t known, and catching early the issues with microbes, sleep, hormones, environment, and the time a cell is exposed and the resultant changes it makes to cope would be much more effective than a passive approach to significant cellular changes that result in cellular dysfunction (ie: the current watch and wait approach) 🤔🙂
No idea what this might mean, however I do find it interesting that the ongoing search for targeted treatments get close, but then there’s sometimes another issue that is then discovered that sometimes is a barrier to the treatment being able to work across multiple variations and sub-variations; I’d like to know the why of these issues, as well as the what to do about them, and that sometimes means an inductive rather then deductive approach 🙂
Just musings of a curious mind 😉
If you do come across any research that you’d like to discuss, I would be delighted to reply to your posts and explore with you anything you find 🙂
I hope you’re having nice weather in the Pacific Northwest!
And it’s a great thing to read that having this strange, no-mans-land kind of condition isn’t as stressful for you as it used to be - I’m very pleased for you and it brings a smile to know the emotional component that often sits quite unseen beside illness is going well for you 🌺🙂
Knowing that people are coping gives hope to those who sometimes aren’t sure if it’s possible 😀
I hope you have a lovely evening 🙂

mguspixie25: It is absolutely lovely here right now. We are having sunny weather today. We have had the occasional rain shower which has boosted growth in my garden. My roses will bloom soon. The wild life is happy too. The deer and their fawns. The many birds and other wildlife are happy. And the neighbor kids are out playing baseball. Life is good.

I would think the International Myeloma Foundation (Dr. Durie and his wife are involved wit the IMF) need people like you to work with. My mind does not go in the research direction at all. Yours is a gift. I hope someone will use it.

I have had so much stress over the course of my life and wondered if that was a contributing factor. It would be good if someone did a study on MGUS patient’s social history over the coarse of each individual’s life to see if that plays a role. Or if where you live plays a role. I definitely believe there could be an element of stress and fight and flight hormones involved as you wondered about previously.

Have a wonderful day. 💐