MGUS and pain
I was diagnosed with MGUS the Fall of 2023. Recently I am experiencing severe pain in my right knee, left ankle and now my neck/shoulders. Has this happened to anyone else? And does the pain relate to the MGUS?.
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It would be good to check with you PCD and a neurologist on this. Neuropathy can come with MGUS, but that is generally in the extremities. I have polyneuropathy, which is likely due to my celiac rather than MGUS; it is mainly loss of sensation in my hands and feet, including feeling less pain. A full evaluation could give your some answers and treatment for the causes. I'm 70 and spend a lot of time on diet, exercise, and other healthy stuff, just to balance out my various body parts that conspire against me.
Thank you. I’m
Going to contact the doctor now yo schedule an appointment
I was told MGYS doesn’t bring on symptoms??? Just something to watch? Did Dr tell you feet and hand myopathy is due to it!? ( I have that - due to other things I thought)
I don’t have much information. I’m supposed to have a blood test every 6 months.,w it’s free first blood work, the doctor told me the numbers were ere fine and gone back in 6 months.
MGUS is considered asymptomatic and with a 1%/year risk of progressing to SMM or MM. However, there can be symptoms such as neuropathy in some people, especially if the MGUS proteins increase. I was diagnosed with MGUS 8 years as a follow up to my polyneuropathy diagnosis, but it also be part of celiac. Either way, the neuropathy is pretty minor in me. I collect autoimmune diseases so figuring out what causes what is like solving a puzzle.
Ahhhh!. Thanks for clarity! And I get you! I have several too … love ‘collecting’. Lol
Bless you and keep sense of humor!
Just recently diagnosed with MGUS. Since research is my favorite thing, dug into it. And although MGUS is often asymptomatic, it is not always: bone pain seems to be mentioned as a symptom on a variety of authoritative websites -- in fact, sounds a lot like what you are talking about. So yeah -- keep pushing.
In my case, the MGUS diagnosis emerged from a last-ditch set of tests to diagnose my peripheral neuropathy, "last ditch" meaning that if I hadn't pressed hard on avoiding "idiopathic", they would not have done this particular set of tests. So apparently my neurologist who specializes in PN normally doesn't go there, but didn't find it a totally unreasonable thing to check out. And again, you'll find studies demonstrating a high level of correlation, whether or not it's definitely causative.
@projfan
I do have pain which may be attributable to MGUS but when one has coexisting conditions it's hard to tell. Diabetes, Celiac, age (let's not talk about that!) may also contribute. there seems to be some little they can do about peripheral neuropathy and the symptoms, it's frustrating.
Have you found any good treatment strategies?
In regard to treatments, I'm hoping I won't need an MGUS treatment strategy for a long time.
In regard to the PN, it stopped progressing when I cut all supplementary B6 out, so that was good. I explored a lot of stuff from the Mayo Clinic blog here, and what's been most helpful symptomatically have been toe socks combined with Vivo Barefoot shoes.
@projfan Yes, I should have been more specific. I hope not ever to have to start blood disorder treatment.
I like the "barefoot" shoes as well. I read an interesting article several years ago about aging and balance. It stated that as one ages, the spacial reference diminishes between the feet and the floor. So the barefoot shoes made sense to me when I saw them advertised.
It took me a long time to get into neurologist as they are in short supply in my community for whatever reason. I tried gabapentin and had tingling in my fingers which was weird but we discontinued that and this neurologist prescribed pregabalin. We'll see how that goes.
Toe socks!. I'm a seasonal sock wearer so when the weather gets cold again I will try that. Thanks!