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.

My husband is a lot like you. He gave up gluten, soy, dairy, nightshades, grains except for GF oatmeal, legumes and nuts. He has only beef, chicken, fish, certain fruits and veggies (very healthy!). He also takes methyl B12 (thanks to this board!), calcium, Vit D and Metagenics fish oil EPA-DHA 6:1 to help with inflammation. His pain level has decreased immensely! The homeopath said he has "leaky gut". He also takes Metagenics glutagenics before each meal to help heal this.

I'm so thankful for this board!

Take care,
Cindy

Yeah it sucks with the constantly barraging doctors.

I have found that if you go in there and talk like you kinda know what you are saying (even though u know your body and did some research)
doctors do not like this. THey feel like you are being rude in some way to their medical expertise..

So now I just ask questions and not go into detail about the things i have "read".

I just got back from my GP. Going to get a second opinion from another neuro. this time I actually got refered to this neuro from a board member! So im keeping my fingers crossed.

IN the meantime.. the dr. pushed me to try amitriptyline ... im going to give it a shot for a month. see how it goes.

Cheers Everyone! Stay Positive!!!!

Dear Mite,

In addition to all the great advice already given, and your good work in going gluten-free and dairy free, and taking Vitamin B12, etc., I'm wondering:

Are you taking any acid blockers, for gastric reflux? Acid blockers cause peripheral neuropathies.

Also, are you taking "sub-lingual" (under the tongue) "Methyl" cobal amin type of Vitamin B12? (works better than the "Cyano" cobal amin type of B12).

Carol
Concerned lady
http://cantbreathesuspectvcd.com

I have one physician with whom I can be myself and speak my mind....the rest I have to dumb myself down....'I have this pain, here', instead of telling them exactly what I mean.

I have been pretty stable for a while....at least it appears that way, despite having some bad lab work...without a major crisis, they think I am fine. Frankly, I can see some progression, but, I can't put my finger on it....more pain doesn't cut it. More fatigue doesn't cut it....it has to be something they can clinically measure....ah yes.

I think I will go stick my head in a good soft sand pit today....wanna join me? The world can go on without me today.....I am communing with the ostriches of the world.