Living with Neuropathy - Welcome to the group

Hi @soonerchris, Welcome to Connect. My vote leans toward snake oil but then I'm no medical expert. It's good that your mother has you to help her navigate this condition. There is another discussion on neuropathy clinics that you might find helpful here:

-- Neuropathy Clinics: https://connect.mayoclinic.org/discussion/neuropathy-17/

A couple of legitimate sites to learn more about neuropathy and treatments:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Has your mother been diagnosed with neuropathy and on any treatments?

Hi Everyone,
so glad to find a place to learn about this awful condition.
Elder gal just wondering how I'm going live with this.
Look forward to meeting you.
Recently diagnosed with P
Neuropathy.
MMK

.

Hi MMK @mmksf, Welcome to Connect. I'm sure you have a lot of questions and you've found a nice safe place to meet others that share your symptoms and concerns. You are definitely not alone. There is another discussion that you might want to read through where members have shared their neuropathy journey.

-- Member Neuropathy Journey Stories: What's Yours?
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.
There are also some good sites to learn more about neuropathy that you might want to get familiar with:
-- Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

What is your most difficult neuropathy symptom to manage?

@johnbishop see's seeing a neurologist and is currently on Lyrica but still having pain and numbness. I've done some reading about The Protocal 525 and some of the other mineral and vitamin products. We ordered one of these but not The Protocol as I just read about it after ordering the other.

I'll do some more research and steer her away from a clinic.

Thanks for the info.

My name is Gary and I am 77 years old. I was diagnosed with idiopathic peripheral neuropathy 12 years ago and was told if it begins in a mild form it generally stays that way. Conversely if it begins aggressively it gets progressively worse. Is this true. My tingling and burning in the toes has progressed to mild electric shocks in the lower legs with stiffness and mild weakness in the quads. I have been taking Metanx for the entire time. Embarrassed to say I am not sure it works. A herniated lumbar disc with stenosis and radiation down the leg has come and gone a few times. Walking a few miles everyday no matter what has made the difference. Not sure what future holds

My diagnosis is PNS.
I understand the tingling and burning that you are experiencing. To start, I am sorry to here of your condition. I was unable to walk. My neurologist prescribed low doses of Lamictal and increased milligram slowly. 15 years after the onset of this condition rarely do my feet burn. I continued my care with the Neurologist that first started my case.
Wishing you the best.

@Hopefully53

HELLO GARY,
I WISH I COULD OFFER YOU INFO, WITH REGARD TO.NEUROPATH
BUTI HAVE ONLY RECENTLY BEEN DIAGNOSED WITH NEUROPATHY
AND I AM SQUEAKY BRAND NEW TO THIS CONDITION. I DO HOPE OTBERS ON THIS SITE WILL BE ABLE TO ASSIST YOU.
MY BEST WISHES TO YOU THAT YOUR PAIN IS BROUGJTNTO.AN END.SOON!
BEST OF LUCK GARY,
MMKSF

I am 64 post head and neck cancer. 8.5 weeks of chemo/radiation has triggered plaque psoriasis (entire body) resulting in PA. I have a lot of collateral damage. I too have PTSD/Anxiety. If you are a veteran, the VA might be able to help. The VA has a few different studies ranging from HBOT (Hyperbaric Oxygen Therapy), microdosing MDMA, microdosing psilocybin with very promising results. The AMA and insurance makes HBOT almost impossible to get treatment or out of pocket is about $1000 per treatment and the total treatments are about 30. I feel for you brother, you are in my prayers.

This neuropathy affects us all so differently, and some have accompanying spine issues, others like me do not. My idiopathic PN slapped me very quickly; one day my legs felt weak, then 10 days later I was in a wheelchair, with minimal hand function as well. I lived in the wheelchair for 6 months, before aggressive PT helped me build muscle strength and regain balance. I use my walker when out, but today can walk unassisted short distances and even drive. I still have bad neuropathy and take Gabapentin to help make it tolerable, but hands down, I got better from where I started, not worse, and have been at this plateau for a few years.Like many others here, what I’m trying to do is maintain strength and energy to do anything we might be able to control to maintain our current state and not get worse. Think positive, and borrow from the tips from this group to see what you might be able to do to help stop the slide!

I had a Laminectomy done in Jan 2020 on L3-5 & I was doing well & becomming pain free (in that area of of spine). On march 12, 2020 i got my second of the first two covid shots & went through 3 days of chills & sweats that never really stopped, just changed. Went through all the "rule out" tests & finally saw Neuro & got skin biopsy & SFN Dx in Sept 2020.