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Does anyone have neuropathy related to MGUS?

Blood Cancers & Disorders | Last Active: May 14 11:39am | Replies (102)

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@pmm

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

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Replies to "Your description of the sensory deprivation connected to neuropathy resonated, and also made me laugh. It’s..."

Just spoke to my Hematologist/Oncologist about the cream for foot nerves and clinics and he shared 1 out of hundreds of his patients said it helped and the help was a shoe insert! I got those from podiatrist.
Otherwise everyone said waste time and money. I have not checked personally.

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) 🙂