Does anyone have neuropathy related to MGUS?

So sorry to hear what you’ve been through. I’m glad you’ve been able to get the medical help to stabilise your back as much as possible. And it’s very nice to hear the knee replacement is working out. The gene variant/mutation you have, does that impact on ability to process iron/folate? It’s been years since I was an anatomy teacher (and I have memory loss and cognitive decline corresponding with MGUS development), so I can’t quite remember with accuracy that particular gene change and the outcomes on functional biochemistry.
I can relate to the PN in feet/ankles - I can’t feel it from just above my ankle and down (I shut my foot in the car door yesterday when it fell closed and didn’t notice it was bleeding inside my shoe until I got home and took off the shoes). I have loss of vibration detection from nerve root compression in my spine on the left (but vibration detection is present on the right just under my knee - left leg cannot detect it. That’s one rough way to see if it’s spinal or PN, maybe..?)
Haemolytic anaemia sounds like a serious complication for MTHFR?

I have Smoldering and PMR. avout a week ago, my fingers, wrists, and elbows started hurting and having burning sensations. The rheumatologist onc in a few days, will mention as it could be neuropathy related to Myeloma.

Hi all! Brand new MGUS IgA here, with severe neuropathic foot itch (bottom balls of feet) as the symptom that prompted my testing. I now also have some insect-crawling sensations. It's hard to follow the various threads in here so I hope I'm posting a new general one.

I'm an active 52. Nerve conduction study negative/no damage. I'm awaiting a neurologist in NM because we only have a small handful and they're all booked out about a year. Assuming I'll next have nerve biopsy and confirmation of small fiber. One diagnostic clue is that I can feel the itch intensify based on how I move my foot around.

I'd be interested in any recommendations or papers on slowing progression and symptom relief. (I unfortunately can't afford that protocol supplement recommended elsewhere.) I'm also wondering whether some of the meds people use to reduce M protein (fenofibrate, Velcade) also slow or help with neuropathy.

What's worked for me thus far: ice packs nightly to sleep, some meditation, and already on amytriptiline and B12 for other stuff.

What didn't work: alpha lipoic acid 300mg. It coincided with painful nerve pinging all over my body which subsided two days after stopping the ALA. I'm planning on trying the acetyl l carnitine next. I'm also avoiding B6 because of an Australian Health finding that it can increase PN for enough people that they no longer recommend it.

Any suggestions would be most appreciated. Thank you!

What became of your two conditions?
I believe I might have PMR secondary to MGUS, or perhaps progression to Smoldering Myeloma. It seems that these can be co-morbid conditions.
Is there a research project that is studying this? I would be happy to join if it helps others understand their conditions and treatment development.

I am 69 and have mild polyneuropathy (mainly loss of feeling in arms and legs) from IgA kappa light chain MGUS (8 years) and/or celiac disease. My MGUS is asymptomatic so I just use my hands and feet to keep the nerves engaged (woodturning and other hobbies). I use bioavailable curcumin (otherwise curcumin in turmeric is poorly absorbed); I don't know yet if that will impact my kappa numbers. Here is one link for foot bathing/massage and neuropathy; because it relates to chemo damage it may not apply to us as much: https://pubmed.ncbi.nlm.nih.gov/25275582/ . There are a lot of ads for TENS ems stimulation of nerves, but good to check with doctor or PT on that. ResearchGate has some pubs on massagers being good for peripheral neuropathy: https://www.researchgate.net/publication/339846541_The_Effect_of_Foot_Massage_on_Decreasing_Peripheral_Neuropathy_Diabetic_Complaints_in_the_Patients_with_Type_2_Diabetes_Mellitus . A lot of the research is tied to diabetic neuropathy. I generally recommend a food log and elimination or FODMAP diet, in case any foods result in GI or other inflammation.

Still have PMR, I'm trying to reduce on Prednisone, down to 12 mg daily from 15. Seeing the rheumatologist in early May, should reduce even further (11?). I've started IVIG from my Smoldering Myeloma eating my IgG immunoglobulins. There have been numerous studies on Myeloma, if it can be a precursor or lead to Autoimmune conditions but many researchers say there is no conclusive evidence to that effect.

I have neuropathy in both feet now after 19 years of very slowly progressing (grateful) IgGkappa light chain MGUS and take 2-3 Gabapentin capsules which relieve symptoms. In recent years my feet have “gone to sleep” after sitting awhile causing me to stumble and fall when subsequently getting up. MGUS is not a minor condition.

Gabapentin interacts with a medicine that I am on, so I wouldn't be able to use it. My symptoms aren't bad enough for meds so I just do balance, exercise, and hobbies. MGUS and associated symptoms can be nasty.

@remainanonymous
Welcome to Connect. Neuropathy is a frequent topic among the MGUS members so there is indeed a lot to read among the comments.
I have PN in my feet which I find quite annoying as I am an active 71 year old. For a condition that supposedly creates numbness, it’s painful. I think your situation in New Mexico is typical of everyone’s experience and trying to get into a neurologist, particularly a neurologist who is even familiar with PN and MGUS. My it makes you PCP referred me a year ago when I have had to see one. I also have type two diabetes, which is well-controlled by medication, but this throws them off the scent of the MGUS/PN relationship.
My PCP did make the referral, but as otherwise not helpful with this. She sent me to a podiatrist who was next to worthless in terms of providing relief. The podiatrist sent me to an orthopedic surgeon who looked at me quizzically and told me that from bone structure perspective, my feet or definitely intact and nearly perfect. Sent me to another podiatrist. Again, a waste of time. My hematologist/oncologist tends to blame the diabetes because my numbers are stable and he doubts that the two are related.
So I feel your pain. Literally.
Interestingly, the orthopedic surgeon is the one who prescribed gabapentin. I started getting tingling in my fingertips after about a week and researched it myself. There was a study that found that women who had been on gabapentin sometimes experienced this tingling. Having neuropathy in my feet is quite enough thank you. He discontinued the gabapentin and the tingling stopped. He did recommend HOKA sneakers. They are pretty fabulous. SADLY this is the only useful information I have received.
Here are a couple of articles from my reading that I found helpful to just confirm that yes, peripheral neuropathy associated with MGUS is, in fact, a thing. It would be more helpful if there was something that could do about it. I have yet to find that and I do appreciate this discussion.
I was surprised that “foot itch” describes your symptoms. Do you have associated pain?
https://www.mymyelomateam.com/resources/mgus-and-peripheral-neuropathy#:~:text=Certain%20symptoms%20or%20complications%20caused,may%20offer%20short%2Dterm%20relief.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7604635/
So has your Hem/Onc physician addressed this at all or is she/he looking to the neurological workup to deal with treatment?

I'll add a quick comment. My neurologist found the PN when I complained of pins and needles down both legs. That was about 30 years ago. I've been taking gabapentin for years and it helps quite a bit. Some years after the PN discovery, another neurologist did a complete blood workup, which was when my MGUS was found. I've had six-month checkups for about 10 years with a 1.5 M-spike.