Does anyone have neuropathy related to MGUS?

I knew they were going to be Hokas!
I need to get me some…

I don’t know what Hokas are?

Just saw this question via the Mayo Clinic Connect email.. I’ve had neuropathy for around 6 years now (MGUS IgG lambda low IgA), and I’ve tried high dose IV steroids (no improvement once ceased), cellcept (significant worsening once ceased), mestinon (works but with quick tolerance resistance), and colchicine (allergy - was unable to see if it was effective). The only thing that has helped in my case is adequate nutritional supplementation of vitamins, as well as supportive nerve cell care (supplements that support brain and peripheral nerve health and anti oxidation), however they’ve only slowed progress; not reversed it. I have been exposed to significant pesticides and herbicides as a teenager working on farms (no such thing as PPE back then), as well as other chemical toxins from metal work without fume protection (welding in confined spaces, petroleum products on skin and inhaled from atmosphere for extended periods), and coal dust exposure (mine visits doing return to work assessments).
I was seeing a professor of neurology however he had no idea what to do and was pretty much experimenting with the above medicines. My haematologist denies any link at all between toxic exposure and MGUS, as well as MGUS and peripheral neuropathy (despite research papers to the contrary which I have provided for him to read).
The peripheral neuropathy used to bother me with frequent falls (I fall often due to lack of sensory awareness), however I’m used to it now, and the benefit is I don’t feel the bruises. I also don’t worry about hot water, jamming my fingers in car doors, or dropping heavy/sharp objects onto my feet. The only thing to watch for is if you cut yourself and don’t know that you might be bleeding quite a bit (turn back and have a look behind you every now and again for the telltale trail, if you’ve been doing anything that can result in injury 😉). Inflammatory bowel disease often prevents taking a strict regime of supplementation in my case, so I just take what I can, gut permitting. I live alone so I tend to not worry too much about it, based on all the other stuff that running a household alone comes with which require a little more focus 🙂
The worst bit of the neuro fallout is memory loss and cognitive decline that I’ve noticed progressing over that same 6 years or so. But that again is something I’ve learned to compensate and adjust to.
Along with some of the dietary references above, I take a super greens and reds, lecithin powder (sunflower), silica, and a gut support powder with specific probiotics (very helpful in reducing systemic inflammation - as shown by changes in brain inflammation on mri).
I’m thinking to ask the haematologist to consider IVIg..no harm in experimenting one more time 🙂

Your description of the sensory deprivation connected to neuropathy resonated, and also made me laugh. It’s so good when we can find a slice of humor in our a frustration pie.
My hematologist denies any connection between the neuropathy and MGUS. It is the persistent thorn in my side as it limits my mobility. I am also much more inclined to fall which can be both painful and embarrassing as I seem to fall over inexplicably, tripping on imaginary bumps in the path.
I see ads on the television that claim to cure neuropathy by manipulating the nerve endings in the feet… They don’t explain how and I have been tempted to call them and see what wonders of modern medicine they are hawking. Has anyone tried that?
Happy Thursday, y’all.
Patty

Your description of the sensory deprivation connected to neuropathy resonated, and also made me laugh. It’s so good when we can find a slice of humor in our a frustration pie.
My hematologist denies any connection between the neuropathy and MGUS. It is the persistent thorn in my side as it limits my mobility. I am also much more inclined to fall which can be both painful and embarrassing as I seem to fall over inexplicably, tripping on imaginary bumps in the path.
I see ads on the television that claim to cure neuropathy by manipulating the nerve endings in the feet… They don’t explain how and I have been tempted to call them and see what wonders of modern medicine they are hawking. Has anyone tried that?
Happy Thursday, y’all.
Patty

Hehe, that’s actually a description of literally what it’s like day to day at my house. While repairing something I inevitably slice my hand with a screwdriver or drop something on my foot, and never realise till I see blood all over the floor, my clothes, and benches/furniture - my house would look like a crime scene under black-light.. I stopped going to hairdressers having grown tired of them asking why I have bruises on my head and shoulders (from impact with walls and floor due to these daily random falls). Six years of increasing falls and they’re just not the same priority as they used to be, I guess..they’re just part of my daily life, like breathing, and headaches and tiredness if my head connects particularly hard with the tiles. Sometimes I’ve been stuck for a couple of days where I’ve fallen because I’m really hurt, but nothing I haven’t been able to eventually crawl into bed and mostly recover from given a few weeks or so 👍🏻
At least neuropathy makes the sensation of pain and injury much less to the point of not feeling it in my arms and legs, which in turn makes it much less distressing to have so many falls/mishaps which would otherwise be painful 🙂
I’ve seen treatments using near infrared, compression socks, and other modalities related to changing the signalling from prior injured nerves with the brain - claiming to cure neuropathy, however I wear compression socks to my knees daily due to risk of clotting with no perceptible improvement in neuropathy (motor or sensory), I have used infrared extensively with zero perceptible change, and I’ve tried various methods/meds claiming to alter the ‘perception of nerve injury in the brain’ with zero change (likely because the peripheral nerves are damaged and so cannot send the right signals rather than me ‘thinking’ the signal is just one of injury). I’ve had nerve tests and there’s peripheral damage. I’ve had brain MRI’s and there’s also inflammation/loss of mass, so it’s clearly not the way I’m ‘deciding to think of my “pain”’ (it’s not actually pain, it’s numbness and loss of proprioception).
Mostly here I’ve been conditioned to avoid medics because they are more forceful than a drug dealer when it comes to pushing mind altering chemicals, which I’m not interested in experiencing again due to their incapacitation (side effects like hallucinations, dizziness, falls (!!), double vision, seizures, depression, suicidality, etc), and besides being awful to experience, I need to be as functional as possible to facilitate living alone/remain independent.
There are podiatrists here that claim laser treatment will treat ‘nerve conditions’ when applied to the foot, however I haven’t bothered to investigate.
The other symptom I get is the sensation a giant axe has instantly split my leg into two from the knee to my toes, in the night several times which wakes me up yelling in pain (I’m not sure if it’s the sound or the pain that actually wakes me up), but that’s been some years now so I’m used to it (its not a priority). It’s 4:35am and I’ve been awake with a sensation the bottoms of my feet are being hit repeatedly with hammers for the last two hours after a particularly intense axe-split event, but it’ll settle soon 😉
It’s not so bad because it’s not a consequence to survival (I have diaphragm palsy so that’s a priority - I use a ventilator to keep me alive while I sleep, which is worth much more close attention to making sure the equipment and parts are all in working order before I go to sleep each night than a couple of whiny feet) 🙂

Hello @quarksunite, Welcome to Connect. I've never heard of MGUS causing neuropathy. I also only have the numbness with my neuropathy and haven't found any real solutions to make all go away. I do take supplements that I believe have slowed or possibly stopped the progression but that's subjective on my part. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

There is another discussion that you might find helpful although it's not specifically related to MGUS.
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/.

You can find a list of supplements that may help on the Foundation for Peripheral Neuropathy on the Complementary and Alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

How long have you had the numbness?