Welcome to the forum Nancy.

I have had neuropathy for at least 10 years, if not longer. My first real diagnosis that I remember, was carpal tunnel at least 10 years ago. I do remember complaining about this ache and that ache, and being told I was too young for so many aches and pains. It is all gluten related for me, at least we think it was the monster that caused all this toruble.

I have gluten ataxia, sensory neuropathy, axonal neuropathy, arthritis, and good old sleep apnea. We will never know where my B12 level was way back then, no one ever tested me for the level. Five years ago, I started taking B12, and will always take it. There finally has been minimal improvement, which is all good. I take 5000mcg daily of Jarrow Methylcobalamin Sublingual B12, and my neuro told me to continue with this dose. My last level came back at 1016. I'm thinking it must have started out pretty low.

Over 13 years.
My pain has been up in the 8 range much of that time.
Now my pain is about a 4 or 5.
Take 150x2 of Lyrica occasionally Tramadol and Lidoderm Patch.
My b12 is 396
I walk or run 3 times a week and I run 4.2 miles Saturday! Milestone for me! I hike once a week in the summer.
I eat healthy and I've been on supplements (again) now for 2 months and they are helping. I need to stick to it relentlessly!!!!!
My goal is to get off all rx meds!

have MGUS. Diagnosed after PN discovered 5 years ago. I still get my yearly blood test and, fortunately at this point, it still is at an extremely low level. But, there always is the small little voice in the back of my head that can be brought forward when I read about a person dying from multiple myeloma.

Hi Nancy W,
I was diagnosed with anti-MAG neuropathy 7 years ago. I have tried IVIg (with improvement initially) and numerous oral medications. I would like to try Rituxan, but my insurance won't cover it. I am currently going down to Seattle to see a neurologist at Virginia Mason. Not sure if he will have anything new to offer, but at least he has taken care of others with this ailment. How are things going for you?
Best wishes,
NancyKay

I first noticed my PN 14 months ago.

Symptoms have steadily progressed since then -- moving from toes to feet, to legs. Just starting in my hands the last two weeks.

Currently, I'm on 1500 mg of gabapentin per day, but I'm about to request increasing it to around 2100 mg/day since I'm starting to have pretty regular "break through" pain with only 1500 mg/day.

I've had extensive tests, but currently am labeled "idiopathic".

After 21 years and a gazillion tests I am still idiopathic. And no, I am not diabetic or near-diabetic. They can find no reason for my PN and I no longer care. The untreated pain is severe but for the past 7 years I get good relief using Fentanyl patches (125mcg/h) changing them every 48 hrs - this reduces my pain down to a rough 2 to 4 on the Mankoski scale. (And I don't want to think about those first 14 years - causes an urge to kill.)

I've learned to pretty much ignore these lower levels of pain as well as the numbness, pins & needles, and all the other PN symptoms. I continue to walk a mile or two daily and still drive my car w/o incident. Next month I'll be 77 so expect to stay this way till the end barring a miracle for which I'm not holding my breath. I thoroughly enjoy life and never feel sorry for myself: I have PN but PN does not have me. GO PNers!!!

I've had PN for 2.5 years.

I currently take:

1) Gabapentin- 600mg tablet (4x a day)
2) Lyrica- 100mg caps (3x a day)
3) Baclofen- 10mg tablet (6 tabs a day)
4) Methotrexate- 2.5mg tablet (8 tabs per week)
5) Folic Acid- 1mg tablet (1 tab a day)
6) Vitamin D3- 1000IU tablet (1 tab daily)
7) Vitamin B12- 1000mcg tablet (1 tab daily)

These are all for Peripheral Neuropathy/Auto-Immune Disease/Fibromyalgia (They think they are impacting one another to make the pain worse)

As for pain, my feet have every kind of pain you can think of, burning, stabbing, aching, tingle, pricking, etc. I also have some partial numbness in the bottom of my feet. The fibro causes me to get random aches and pains- sometimes feeling like I have been hit in spots- so tender even water in the shower, or a finger grazing them kills.

For about 2 years my Neuropathy kept getting worse, then they put me on Methotrexate and things started to improve. However I hit a plateau a few months ago, which I wish they would figure out how to break...I am at the end of my rope with this (living in perpetual pain is enough to drive you mental).

Onset 10 years ago from very healthy to within a year, wheelchair and other ambulatory aids. Have had all the tests and even IVIG (did no good) - sural nerve best disagnostic tool i've had - almost complete loss of large mylinated fibers, less loss of small, also loss of both large and small unmylinated fibers, and severe damage to axons.... nothing they can do for the pn at all, I accept that, my biggest battle is with the autonomic portion, gastroparesis very very severe from it and constantly have malnutrition and nausea every day, cardiac issues, and severe back pain and weakness... the back pain is from disk disgeneration and I think from being so sedentary, another MRI this week to see how bad it has gotten.... they would do surgery if I could get around normally but I cant, so we're trying to find some alternative so I can least sit up for more then a couple hours at a time.

The weakness is scary and progressive - but PT tried repeatedly has just made me worse.... so just take it day to day... I dont expect much expect hoepfullly maybe some relief with the gut so I can eat something again,and a lessening of the back pain.

They think its a form of heridtary sensory motor automic PN, but there is no test for the form yet. And yes, another fam member has had PN in his feet for 40 years with no diagnosis...

Ya never know whats gonna happen, just take each day for what I can make out of it.....