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 🙂