newbie
 

Hi My name is Jolina and I am undergoing tests for neuropathy not sure which one. It started about 1 month ago. kinda like skin sensitivity all over my body. wanting to scratch it or rub what ever was feeling that sensation. then my hands and feet felt like they were dipped in icy hot. when to dr. got blood work done. b-12 level was 250 so they thought is was that. I am on 1000 vitamin b-12 once a day. then I went strait to a neurologist two days later. I was not going to just sit around and "see" if it got better. they want to do a nerve test in two weeks. I then called three days later to see if they could give me anything to take away this feeling. the burning was getting to me. they put me on nuerotin and I have had a few "episodes" but nothing horrible. I am now really tired and my arms are tired all the time. I had a headache for the first 5 days of taking it. 200mg three times a day. is this normal to feel this way on this med. sometimes I feel great and back to normal then the next day I am not wanting anything to touch my skin. has anyone else had this. is this the beggining of something horrible. I have three kids 5, 4, and 1. I want to be around for them. I hate this. I just got my body back to normal, feeling great. lost a lot of weight and now this. This just sucks. and it sucks I have to wait to find out what wrong. can it be healed. I have had tail bone pain for about 1.5 years. I am wondering if that has anything to do with it. any suggestions or help. words of wisdom. I would love it.
thanks for ready this.
Jolina

My only words of wisdom are: HANG IN THERE!!! Welcome to the community...you're not alone! Many of us here have dealt with "mystery symptoms" and gone down more than one medical path before receiving a diagnosis.

The hard part, as you mentioned, is the waiting and not knowing. But almost everybody gets a diagnosis at some point, and then you can start working on making it better.

Hello!!
 

Jolina,

Nice to see you have decided to come be with us.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways. Just let us know if we can be of any help.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

Welcome to Neurotalk, Jolina--
 

--though I'm sorry for the situations that brought you here.

That B-12 reading is WAY too low; I'm not surprised you have neurological symptoms. B-12 deficiency eventually affects every system in the body, but among the first to show problems are the nervous systems, both central and peripheral. B12 deficiency can cause brain lesions that mimic MS and other demyelinating conditions, can result in subacute combined degeneration of the spinal cord, and can cause havoc in the larger peripheral nerves.

You're obviously going to need massive supplementation to help repair what can be repaired--I'd recommend at least 5000mcg (5 grams) of the methylcobalamin form daily for a while (just in case you have genetic methylation chemistry problems that would prevent you from optimally converting most commercial preparations, which are cyanocobalamin, into the body-usable methylcobalamin).

A big question, of course, is WHY you are so deficient. Have you had testing for lack of intrinsic factor? You mention having lost a lot of weight recently--was there any bariatric surgery involved? (Such surgery is often associated with deficiency, as the stomach sites that break B12 out of food are effectively eliminated in the bypass process. Docs who perform it should put patients on B12 supplements immediately, but they often don't think along those lines.)

You should come look over the big B12 thread in our peripheral neuropathy forum:

http://neurotalk.psychcentral.com/thread85103-14.html