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Does anyone have neuropathy related to MGUS?
Blood Cancers & Disorders | Last Active: May 14 11:39am | Replies (102)Comment receiving replies
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!
Replies to "Hi all! Brand new MGUS IgA here, with severe neuropathic foot itch (bottom balls of feet)..."
@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?
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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.