Does anyone have neuropathy related to MGUS?

Good grief! If I thought my leg was going to feel as though it was split in two by a giant axe in my sleep, I would think that would be grounds for chronic insomnia!
I’m so sorry.
You’re right. It’s always perspective. I am so lucky to have symptoms I can work around and live with. You inspire me with your grit and determination!
Patty

I have MGUS and suffer of peripheral neuropathy (PN) for at least 5 years. My PN affects my legs and feet and it manifest itself as numbness and tingling but no pain. I’m 86 years old.

I forgot to add I also have neuropathy in my feet. I fall a lot too. But it’s hard to say if the falls come from not feeling my feet, or a weakened left leg from a spinal issue, or bone on bone arthritic damage to my knees.

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) 🙂

Welcome @renesotomayor, I've had the numbness that started in my toes for over 25 years but only bothered to get a diagnosis in 2016 when it seemed to be progressing some. I guess we both can count ourselves lucky that we don't have pain with the neuropathy. I'm 80 years old but living the best life I can and trying to focus on some daily exercise, healthy eating and staying as positive as I can. I have been working a little harder on my balance exercises because I really don't want to have a bad fall and make things worse.

Have you found anything that helps you get through the day?

Sorry for all your pain. Do you have MGUS as well? My heel on both feet fell like a drill is boring a hole about 1/2 inch wide.

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 🙂

started sandblasting and painting jop at 13, used to wash the paint off my hands and face with laquer thinner, five years of that, then exposure to benzene in fuel and constant over the years safety kleen solvents, mechanic 22 years and shop owner 15, mgus at 66, your hemo doc is wrong, damage to dna at bone marrow after accumulated time/concentrate, my stepfather used roundup without ppe and I warned him, he had multiple myeloma, but I find a 2 hour bike ride hike push bike up trails and ride back keeps them away for 2 days, 3rd day they are back, D.mg

Yes MGUS can cause numbness. I have had the numbness for about three years now. It is not complete. I can still feel parts of the bottom of my feet but I feel very unsteady and have to walk slowly. The neurologist I have been seeing is sending me to a hematologist. I exercise but it does not seem to help. What supplements do you take that you believe helps you. I could ask about them when I see the hematologist. What causes your numbness?

Sorry to hear Wendy. Sounds hard. The way I tell the difference between spine issues causing weakness/nerve symptoms in my legs and the issue of PN is how symptoms are in my thighs and pelvis/hips - when this is high, and while laying down I have difficulty moving my legs (they’re heavier/shooting pain from spine to thighs, etc) then I know it’s spinal. When I have stabbing into my hells when I place my foot on the floor, I know that’s spine. Numbness in feet/lower legs, loss of distal proprioception (knowing where my foot is in space and having it move accordingly comes from the PN (it took me years to learn the difference). I have failed prior back surgery for chronic compression from multiple disc injuries when I was 28 (amongst other damage). I have a knee replacement on the left (I got it when 47 due to bone on bone and 5 prior surgeries to help keep it working eventually failing), and I’ve damaged the prosthesis in a fall (I’m waiting on another replacement as this is now very loose and contributes to more falls). I know when it’s the knee when my leg buckled and collapses - these falls are kind of ‘building implosion’ type falls; straight down because the ‘foundation’ has collapsed. Hopefully there’s something helpful there?