Hello! Happy New Year! I am new here so here goes:

I was dx w/Late Onset MS in 2015; spinal tap confirmed MS that started with a buzzing in my torso which I have learned to ignore over the past years. I began having some strange sensations in my feet as though I was walking on small pebbles. I was put on gabapentin 600mg/3x/day by my neurologist. I had & continue to have annual MRI’s to look for new plaque along my spinal cord and in my brain. So far, I am fairly stable w/no new MRI findings. Next MRI’s in 2 weeks. In 2018 I was dx w/bladder cancer and have followed the bladder sparing (I am female) protocols for my diagnosis and have received BCG and Mitomycin as instillations directly into the bladder. At present I am NED. In 2020 just as covid hit, I was dx with breast cancer; Strange location between breast and very close to sternum, but was very lucky to be able to have a lumpectomy followed by chemo and radiation. I am on Letrozole for the recommended 5 year protocol. To date no return or metastasizing of cancer.

Yesterday, Jan. 31st, was 3 years since my last radiation tx. So, you can see I have had a lot of stuff put into me! My neuropathy has gotten progressively worse since chemo ( I lost my hair, my nails and my general sense of well being).

My feet feel as though they are and I describe it thusly, wrapped in duct tape with a numbness & tightness along my arch, behind and under my toes and alongside the outer edge of my feet; there is a “shin guard” feeling going up both legs laterally, again, worse on the right than on the left.

Each time I present myself to my neurologist, she is at a loss as how to treat the neuropathy and recommends more medication or an increased dose which I am leery of doing. I want some wiggle room in case this really gets worse. Right now there is no real pain except for an occasional sharp jab or crawly feeling; worse at night as is usual…I have begun experiencing an itch on my upper thigh, but my legs are sore in places and constantly recovering from weekly injections of my MS immunomodulator.

I am experiencing some balance issues and on a recent trip to NYC, my legs felt heavy and “off” making walking not as comfortable as I have known myself to be.

I can’t take Lyrica, it makes me very nauseous and most of the other meds interact with medications I am already on. I have had OT (I am a long retired OTR) w/electrical stimulation and massage, but nothing has worked. I had spinal surgery in May ‘23 and while it has alleviated the problem the surgery was to have targeted, I still have lower back pain and muscle fatigue. I have begun a simple yoga program to stay flexible and gain stability, but the neuropathy just continues…

I am a problem solver, but I can’t quite seem to get n top of this…from what I read there are so many suffering with neuropathic pain and treatments seem to be hit and miss or attempts at common sense and or treatments outside standard practice and few seem to work.

I am sure there are those of you who are feeling worse or maybe some better…any direction or conversation is welcomed. Thank you for your time.