New to site
 

Hi. I posted in the introduction earlier. I have been reading for a while. I was recently diagnosed with autonomic and sensory genetic neuropathy. Remembering back to my twenties was probably when my feet became completely numb. Told several doctors they all dismissed it as a quirk. So I started to as we'll. I am now 35 and just diagnosed in the last few months. My gastroenterologist is the one that sent me to the neurologist. I thank God for him. Had MRI done and emg. Found I had sensory nerve damage dissipated throughout my body. He said it was extremely rare and not good for my age. The genetic part we are not sure exactly where it came from. Had tons of blood work done. Vitamin D was low and my vitamin b 6 was nonexistent. (Dr. Stated that) so I am on both of those. It has affected my hands. I found a website and ordered some pens so I could hopefully stop dropping them so much as well as a device to help me button shirts. Dr. Said there is no treatment but we will treat symptoms as the come. My feet are constantly freezing. I feel like there is something on them at all times. Sometimes at night the sheets being on them make them hurt. My hands constantly tingle. I have burning in legs on occasions. Massive foot cramps, and random back aches like last night that can almost bring tears. Trying to cut out sugar. Exercising more. This disease is very unknown as far as what to expect, I am not fearful and am taking it as it comes. I truly feel God has prepared me for this. But it would be nice to have others to talk to about the randomness or constant issues we deal with that understand because they re walking through it to.

Dear Sham
 

Welcome to Neuro Talk. You found the right spot to talk about this kind of PN. Many of us have issues if not exactly like yours, equally as painful. I have PN in my left foot and ankle only so far. Don't hesitate to explore all the boards and respond to anyone you want. The site is easy to use. You will make some friends and find support while you deal with this illness. Do you go to a pain specialist, who can offer something to help you out?
I take B12 shots, now over a year on a weekly basis. This plus B vitamines, and a few others has made my symptoms go down. No all gone, but much better. It is good that you had your B checked. I do wish you all the best. I am here to talk to anytime. ginnie:hug:

Hi Ginnie, No I do no have a pain specialist. My pain comes and goes, so until I need something I won't take anything. I am on medicine for my stomach. I will probably talk to my gasteroenterologist about B12 shots, I know he gives them there.

I would strongly suggest you get tested first...to see what your B12 level really is. Don't accept "normal"...as LOW ranges in the US continue to be reported as normal.... below 400 pg/ml which is the new accepted lowest normal now. (it has been 10 yrs, and still the errors continue).

It is not necessary to have injections... oral has been shown to be as good. Use the methylcobalamin form which is activated for the best results.
This is the B12 thread ... please watch the video in the first post.
http://neurotalk.psychcentral.com/thread85103.html

Thanks, I did get it tested when they did alot of bloodwork,I go see my neurologist again soon, so I was going to ask him what the level was. I do better withn injections because of stomach conditions. I will definetly watch that. Thank you