Hi, I'm new and looking for some answers to strange and horrible symptoms. The current options for diagnosis seem to be small fibre non length dependent neuropathy or neuronothapy. My symptoms started acutely in late January with very painful burning, cold freezing (hard to describe!) hands and feet plus abnormal sensations in back of neck/top of back and legs. Pain then spread up to to knees and up arms and is now also in face, scalp, lips and tongue (face stuff is day and night in some way). Worse than this however ( if possible!) is the daytime, weightless, non existent feeling of arms, legs, hands and feet. It's as if they are not there, they feel hollow, empty, like there's no feedback from bones, muscles and definitely no pain, just nothing. Is this what some people mean by 'numb'. It feels like body parts have disappeared, and walking in space. This feeling is now there most of the day with feeling returning evenings when prickling and pain starts. I have had MRI scan of neck, back and normal nerve conduction plus standard blood works, screening for autoimmune and b12. Needless to say I am finding it hard to get through the days. I can't believe his can be happening. The first neurologist I saw labeled issues as psychiatric based on normal Neurological examination but a second neuroligcal ordered all the tests and the current diagnosis is based on abnormal thermal thresholds test. (I live in the UK.) Like so many other people I've read on here, I know that this is not psychological. :mad

I have to ask.... do you know your actual B12 result? I ask because the lab ranges are outdated, and very low levels are still called normal.

If you can get that result and post it here...including the concentration used in your country ( US calls it pg/ml)... I can
evaluate it for you. If you are indeed low and not being treated that would not be uncommon either there or here.

Did you get a vaccine before this started? Did you have an illness/infection? Were you given antibiotics? If so which ones.
Do you take a statin for cholesterol? Those can cause PN.

Hi, mrs d, I did have an infection immediately before a uti. No antibiotics and I don't take any statins. Regarding b12 the range here is 190- 900 and mine is nicely ( I'm sad to say) in middle at 406.

I need to know if your range is pg or pmols?

There is a conversion factor, if pmols.

The report says
Range 406
Result ng/L
Unit range 190-900

Hi, if you didn't take any antibiotics for the UTI, how did you get rid of the infection? Did you take anything?

Thanks, Melody

I didn't take antibiotics but also had had a suspected shingles infection shortly before which I think could have infected the dorsal root ganglia.

I'm worried that this loss of sense of arms and legs is to do with proprieception but I can't find anyone else on this forum having similar feelings, feel like I'm going crazy....or is this just how I experience parasthesias, people are all different. I just feel that parts of me keep (arms, legs, hands, feet) keep randomly disappearing.

dear friend
YOU AREN'T IMAGINING THINGS
AND IT ISN'T IN YOUR MIND
DON'T LET ANYONE ANYONE
MAKE YOU BELIEVE IT IS IN YOUR HEAD
whats in your head is YOUR brain
the feeling you have in the back of your head
is ditto to what i felt for years
that feeling cracked one day
meaning I, ME THE PERSON WHO
LIVES IN THIS BODY
so your neck and than the
following complaints i too suffer
you are not alone
i am diagnosed with several problems
neuropathy is just one to start
be ready to do your homework
and always have a advocate with
you when you go to doctors
also your numbing and hurt at the
same time is real my progression
it now hurts to stand on my feet
let alone when i take a shower
i refer to my sensation
as though my hands and feet
are foreign sometime it feels as
though i have surgical gloves on
the pain in my hands is so bad
i scratch them
as numb as they feel
now how does that make
you feel
i don't think it is in my head
it's the real thing

i wish you relief
and no progression
God Bless

someone that cares

Thanks for providing that. This is similar to pg/ml...
According to eMedicine link:
here:http://emedicine.medscape.com/article/2086344-overview

That lower range listed is not acceptable anymore. The new protocols start at 400. So effectively you are low. And may see improvements if you start supplementing. Best to use
methylcobalamin orally on an empty stomach.

Here is our B12 thread with medical links explaining, a video now, which is very nice, and discussion:
http://neurotalk.psychcentral.com/thread85103.html

Methylcobalamin is the activated form and you will probably have to import it. iherb.com ships to other countries.
Some people require higher levels of B12 than others.
So please read my link and get going.

Thank for he links mrs d. I will explore! Your help is much appreciated.