Does anyone else have MGUS?

@mguspixi25 what a wonderfully informative and helpful post. I, we, use a Zero water filter and have done so for many years. Asheville's water is pretty exceptional, but I don't drink out of the tap ever. PFAS and benzene are two of my greatest concerns. You can run, but apparently not hide from environmental contaminants. I just wish I knew what it was so I could get away from it. Can't believe it might be my house, but not sure what else Steve and I had in common. I've changed my dental floss and toothpaste as it was the only other thing I could think of. Used to use Glide which we were told was Teflon coated (PFAS) by our dentist when we lived in San Luis Obispo for two years. Going to check out the links you mentioned above. Yeah, aren't we the lucky ones with the IgA sub-type - his was a Lamda and mine is Kappa. So much to learn.

Yes, it’s incredibly tricky trying to avoid environmental contaminants, and there’s also individual susceptibility (so my haematologist says) which is also a factor.
I think having different light chains expressed is less significant than the fact you’re both IgA, insofar as the light chains are secondary to the fact you both had a rarer type of monoclonal production. Having said that, sadly it’s been investigated that lambda increases risk, whereas for you kappa is a lesser risk ❤️‍🩹
https://ashpublications.org/blood/article/130/Supplement%201/1780/79509/High-Risk-Myeloma-Is-Demarcated-By-Immunoglobulin
I’ve had considerable exposure to toxins as a kid and young adult, which may be what’s contributed to the development of MGUS? I know I was showing elevated proteins back 7 years ago now (when I was 43), which was unexpected for my gender/ethnicity, however the doc was hesitant to send me to haematology - and didn’t do so - for another 5 years, and it was 2 years ago a BMB showed IgG lambda. This is when I learned what this problem was called, and subsequently was able to undertake research. I had the second BMB today, because the new haematologist thinks I have amyloidosis/light chain deposition disease due to recent increases in Lambda/outside normal K:L ratio, and kidney disease, along with fibrosis in lungs and developing premature ventricular contractions (something I find very uncomfortable because an hour or so of this gives rise to feeling very weak with chest discomfort - very disruptive to sleep when it happens at night). I also have brain inflammation and peripheral neuropathy, so she’s hoping this BMB can give us some answers, along with a kidney biopsy early December. She also thinks I might have a condition called CVID (common variable immunodeficiency), because of a history of bad infections from childhood. The treatment for that is SCIg (subcutaneous immunoglobulin) from those lovely people whom donate blood (it’s a donor product), but that will not have an impact on MGUS/SMM, it will only help with increasing immunity against infection (I’m currently on two consecutive antibiotics for the last few months because I can’t shake an infection, so this may indeed help that underlying problem..the immunologist explained it as IgG has a few different subtypes, called IgG1, IgG2, etc, and I have significantly low IgG1, which apparently is associated with CVID. Then, having bad lambda that aren’t formed properly, they don’t ‘see’ the invaders, and pretty much ignore infections. So the test is, I go have a pneumococcal vaccine and then 6-8 weeks later see if I have a positive serum response: if not, I have CVID, if I have antibodies to the vaccine, then the low immunity is related to MGUS/SMM - especially with low IgA, which was found in the BMB 2 years ago). Anyway, I digress, however I thought it might be interesting to see the intersection of potential inherited or acquired (CVID can be both) concomitant immune deficiency, and the question of how these types of things can coexist, and maybe contribute to symptomatology 🙂

My husband was diagnosed end 2021 and I was diagnosed last week. He had a stroke early last year and, as I now know, we didn't ask enough questions about his diagnosis. We do not know which type he has and I have not had an opportunity to talk to anyone about my diagnosis, just got a letter! We are in the UK. AS you say I wish I knew what did this to us so I could avoid it or at least tell others about it, whatever "it" is.

I’m very sorry to hear this 😔
I agree it would be super helpful to find out the details of diagnosis; I have a colleague who was Dx’d with IgM kappa who has some form of brain vasculitis - she had 3 strokes before they figured out what was going on, and that the vascular issues were related to her unique form of MGUS (there are other sub-categories that are specific to her, however those details are not known to me).
I am in Au, otherwise I would try to help you in some way.
Having said that, I hope there is a mechanism where you can speak with a haematologist directly, who is a specialist in myeloma and MGUS, who will at the least give you all the defining test results, but will go further to inform you of the likely associated symptomatology/things to watch out for according to each type.
Wishing you the very best.

I was recently diagnosed and I am about to finish or rather complete a series of amyloidosis testing but have been diagnosed with it. I have so many problems it's hard to know what's causing what but recently had renal vein angioplasty and stunts put in due to kidney breakdown. I'm not certain of what all it's doing because I do have a lot of problems but hopefully these last few tests will help determine what exactly it's affecting

I have been falling a lot lately and actually hurting myself a couple of times. At first I thought I was just not being careful, then I realized to myself that it had to be more than that. Hearing other people having the same symptoms is comforting although sad that we have to go through it comforting to know you're not alone

It’s sad to know there are many of us who are suffering and in my opinion suffering needlessly. I can’t help but believe if we could be treated for our MGUS, our lives would be substantially improved and at the same time our chance of progression to myeloma forestalled or never occur. But I am the voice in the wilderness as far as my myeloma doctor is concerned. I hope you stay safe.

I have it too was diagnosed approx 8 months ago. Had a 6 month test and MSpike remained the same. Right now I am suffering with knee bursitis. Hope your well

Thank you for this. Take care.

Yes! We have to remember that all treatment options carry risk. Personally, I prefer to embrace the least intrusive approach until such time as my oncologist/hematologist taps his foot and says “it’s time.”
It is a bit maddening to wait, for those of us who are proactive in other aspects of our lives, but you are so right that chemotherapy in particular is harsh.
We can live life well, eat healthy, exercise, take nutritional supplements (if supported by our medical team) and keep our heads in a good place. MGUS is not a pronouncement of dreadful bad things to come. We hope to beat it and die peacefully in our sleep after our 100th birthday celebrated by a gubernatorial proclamation and a party in Time Square.
Or…at least a cake at the nursing home.
😂😉