Gluten very definitely can cause neuropathy, that's how I got my sensory neuropathy. Has anyone checked your B12 level? Gluten intolerance causes you to malabsorb your vitamins and minerals, which in turn will cause nerve damage. B12 very often is a hugh issue, as can be Vit D.

Do you feel better gluten free? I have been gluten free for 10 yrs, after about 4 yrs, I also had to be corn and soy free, then the nightshades went, followed by cruciferous veggies, and now, I eat no grains, no dairy...BUT, am doing much better.

Don't give up. Getting the gluten out of our systems is a slow job, and you must be sure that ALL gluten is gone. Read the labels on everything you put in your mouth, the processed foods are the worst. The fewer the ingredients, the better. I eat nothing processed anymore.

Hello Mite,

I had weird tingly and burning sensations in my foot before it went numb. I have a hereditary neuropathy CMT. I was diagnosed by nerve conduction study. Hoping you get some more answers soon.

--is just another way of saying that the nerves are damaged, but not dead yet, meaning they overreact and over-fire to what would ordinarily be innocuous stimuli. Allodynia is the term for pain produced from nromally non-painful stimuli, or spontaneously from no stimulus, and parastheses is the term for "weird" sensations produced in the same manner, but not necessarily painful ones (one can think of allodynia as a subset of parastheses).

Sjogren's, in my opinion, would only be a cause of neuropathy, if the ANA was elevated....better still, if the SSA and SSB were positive. In the absence of these markers, it is more likely the neuropathy is what is causing the sicca....then you are left with idiopathic neuropathy, and the frustration of having that condition. There are SO many reasons we can have neuropathy, even in the presence of some obvious reasons, I would not be too quick to jump.

This 'overactive nerve' theory is gaining a lot of popularity, (Fibro) since it can be bestowed on people rather cheaply.....'Here is some Lyrica' and that is the end of that.

Two very frustrating conditions to have....idiopathic neuropathy + autoimmune markers of no specific disease....ugh.

Yes, that is my clinical diagnosis ... Two words I hate "idiopathic" and "undifferentiated"

Mere

I can ditto everything you are all saying......I have it everywhere!!!! not a lot of numbness but pricks, water sensations, worms, stabbing every 30 seconds in a different spot, no area spared on body! Neurotin helped a lot, took away about 80% of them. The plus part is I also have an internal tremor in one leg. I also noticed (lately) my right side, especially leg and arm seem to have more sensations than left. All test were just fine! I am now thinking Parkinsons (no test detects that)........only because of my tremor.

Can anyone relate to the one side being worse than other in sensations or tremor factor?

I really think neuropathy symptoms are worse on the mind than the body!!

My vitamin levels are all normal except slightly low b12 and Vit d.. i take them both along with b1.


Invasable yes my Left side is alot worse than my right side.. I need a gooood neuro! im so ****** lol.


Im thinking about starting a new vitamin stack.. see if it helps..

R-Lipoic
Vitamin E
B12
b1
vIT d
Gamma Lineoic Acid
Acetyl L Carnitine
Resveratrol
Fish Oil

Anyone advise against any of these or the entire combination at once??

the worst thing we do is nothing if i would of been more persistant with the dr's maybe i would be walking do a MRI to check your back i had the same feeling numbness tingeling and two years later i lost my nerves from my waist down and the ability to walk so take matters into your own hands!

The fact that how nerves regrow? 'Feels' sort of the same as when they die.
Oh yeah! How encouraging? NOT! The differences are for me at least are that...Nerves dying are persistent, constant, painful, plaintive pains? Then, just the humm of incomplete 'connections' ALWAYS.
Regrowing nerves are at first a bit more well, assertive? THEY SHOUT I AM HERE! With very agressive 'outreach' electrical impulses trying to find something to connect to! When they take your breathe away? And you gasp with a huge OH! MY!? they often abate then start over, how often, is about how fast your key nerves want to 'HEAL'? Luckily for me? They usually last about 15- minutes to an hour.... Fun? Not.
That is the 'living with it' part?
Now, I don't know where you all live or what docs you see? But I too was 'written off' with generic idiopathic PN for almost a year? But, the crud kept progressing... from mid legs to above knees? And wrists to almost elbows. From purely the butt muscles to above? Yes it was PROGRESSING!
After learning to read such boards as this? I learned, that I BETTER GO GET A DIAGNOSIS BEFORE IT'S TOO LATE? Took me 3 neuros, a heap of tests and not to mention? Lots of anxieties? It really does feel good to get those 'second opinons'? And that you can more or less stop beating your head against all sorts of walls and other things.
Learn what you can? Learn how to ask your questions to docs? And then learn not to be a doormat! Also learn just to relate the 'facts' as they happened and not give details...let the medical testings do that for you. Tests usually SHOW 'something is off' somewhere, and it's possibly key to you getting diagnosed! Be sure to get copies of TESTS! ALL TESTS! Other docs mite want to see these tests? But It's good exercises in learning about blood tests, nerve conduction testing, x-ray mri and cat tests then the whole immune testing menus...they are all well, squirrelley and ultimately designed for us, mere mortals to NOT understand! You must learn to understand in SELF-DEFENCE! Then, learn to use it 'tactfully'.
I'm hoping for you and more! May you get as lucky as I did with my latter choice of docs! 's - J

PS? I just hope against hope that your 'second opinon' docs aren't jerks! Too many folks here have experienced them! I didn't know who from what when I'd started? I just followed my common sense and instinct as to where I should go and why one doc was better than another. Call it that 'gut' feeling? Just follow it! You've not much to lose by trying. - J

Second opinion=the shoulder shrug perfected.....yet, press on....one has to do, what one has to do.....the search for the holy grail.