[Mite]

Hey everyone,

posting to relieve some stress I guess :P

Finally after many many blood tests and Dr's Visits, my neurologist said that I have some hypersensitivity of the peripheral nerves which is why i get the deep long tingling in my feet, arms, and face.
She said that before nerve damage and neuropathy kicks in, usuallyt heres a stint of hypersensitivity of the nerves. ( if i walk 10 steps my feet just start doing the shockwaves of tingling)

Note: I do not get numbness, just crazy tingling, muscle twitching, prickling, etc.. all over but mainly, hands, feet, face, eye ticks, etc...

her DX, Idiopathic polyneuropathy.. and maybe some amitriptylene ,.. oh geez thx. lol

== little background ==
18 months ago i started getting numb left ahnd from sleeping on it, 3 months later both hands started tingling heavily ( thoguth it was carpal) ... 2months after, both feet started tingling etc.. u know the story... , I thoguth it was all due to a heavy summer of working landscaping. however who kows at this point.

Ive done blood tests for Vit deficiencies , thyroid, parathyroid, calcium, lupus, MS, NCS, etc..

CUrrently, I am on a heavy Elimination Diet to see if any foods is acting like a toxicity. My dr's think this is wrong and theres nothing wrong with the foods im eating.
However they dont know ****. lol.

Gluten free for 2 months,
Dairy free for 2 weeks, no grains, no potatoes, aswell.
Started a very relaxing acupuncture sessions last week at the acu college in town. 30 needles in my head, the dr. says he will try to change the chemical makeup or something in CNS.


My main question: .. Can anyone confirm that before you started going fully numb and the pain.. did they tell you it was hypersensitivity or whatever,... or did you just go numb from day 1?

thanks to all!

[Sheltiemom18]

Maybe it's just a transient mood that's just hit me. But I've just read the new thread by Mite, and can really relate to it. Now I'm feeling basically fed up with chasing around to neuros who keep on ordering tests that turn up normal, but really don't have a clue as to how to handle allodynia which is the very best medical term for describing my particular SFSN. Don't want to do it anymore. Period.

If this SFNS/allodynia has everything to do with the Sjogren's Syndrome, then so be it. There's no cure for Sjogren's Syndrome, so trying to eliminate the underlying cause of the neuronopathy is useless. But thankfully I'm not desperately ill with Sjogren's like so many others are and/or with the crossover autoimmunes that can develop along with it such as lupus, rheumatoid arthritis, Parkinson's. And 10 - 20% of Sjogren's people develop lymphoma.

It's not that I'm giving up; there just might be nothing that can be done for this allodynia.

[Mite]

Hi Sheltie,

I feel your stress! however, Im fed up with Dr's but im Definitely NOT putting this to rest, infact im trying to experiment and take this into my own hands. Dr's simply through out the idea of gluten sensitivity or any food toxicity. I will still goto Dr's and keep searching for the 1 that will investigate.

Im thinking about seeing a Homeopath soon, (300$/ visit) lol kinda rough but I will save for it,


Definitely do not give up, sorry I do not know much about allodynia , however, Neurologists in my town atleast are SWAMPEd, its a 1 year waiting list and approx 8 months between apointments, SO they are not investigative.

So sheltie, hang in there! Have you tried a homeopath?

[amit]

I was told I have hypersensitive nerves - but after the skin biopsy - it was change to small fibers neuropathy

[Sheltiemom18]

Originally Posted by Mite

Hi Sheltie,

I feel your stress! however, Im fed up with Dr's but im Definitely NOT putting this to rest, infact im trying to experiment and take this into my own hands. Dr's simply through out the idea of gluten sensitivity or any food toxicity. I will still goto Dr's and keep searching for the 1 that will investigate.

Im thinking about seeing a Homeopath soon, (300$/ visit) lol kinda rough but I will save for it,


Definitely do not give up, sorry I do not know much about allodynia , however, Neurologists in my town atleast are SWAMPEd, its a 1 year waiting list and approx 8 months between apointments, SO they are not investigative.

So sheltie, hang in there! Have you tried a homeopath?

Mite,

Should not have gone so far as to "hijack" your post - so sorry. But thanks a bunch for your encouragement. And the same to you. Keep on looking for that one who might just be the answer for you!

No, haven't tried a homeopath. I think there might be a few in our area. But in yours, eight months between appointments? OMG! They don't have time to be investigative. One of my neuros is also an internist and researcher.

For my next trick will search homeopaths.

Best wishes.

[Sheltiemom18]

Mite,

Sorry to gone a bit too far and "hijacked" your post. Thanks very much for the encouragement, and the same to you. Keep looking until you find "The One." It could be the next doc.

No, haven't tried a homeopath yet but think there might be some in this area. Will check it out. Appreciate the suggestion.

Best wishes,

Sheltiemom

[darlindeb25]

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.

[lynxgal]

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.

[glenntaj]

--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).

[cyclelops]

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.