[ssteague]

I'm a new member hoping to get some answers. I have started having tingling, numbness, coldness and burning pretty much all over my body. It started with just coldness in my face a few months ago. I haven't found a lot about the cold sensations, but I know someone else must experience them and hopefully has gotten answers. I am seeming to baffle the doctors. I have already had blood tests and MRI, spinal tap. The nerve conduction is the only thing coming up abnormal.

[sbvcrn]

Originally Posted by ssteague

I'm a new member hoping to get some answers. I have started having tingling, numbness, coldness and burning pretty much all over my body. It started with just coldness in my face a few months ago. I haven't found a lot about the cold sensations, but I know someone else must experience them and hopefully has gotten answers. I am seeming to baffle the doctors. I have already had blood tests and MRI, spinal tap. The nerve conduction is the only thing coming up abnormal.

Hello there
I have small fiber neuropathy for the last l8 months. Finally will see a neurologist who specializes in PN...however seeling regular neurologists now who sometimes think I an NUTS. I have frequent bouts of freezing cold areas (to the touch)but feel like it is burning. These areas are bilateral thighs and upper ams. Interestingly, when this is going on my hands, forearms and shoulders are warm but the upper arms are freezing cold (my husband has felt them and concurs). Unfortunately this has never occured when I have been with my 30 second neurology appointments and they (the docs) look at me...well you know how it goes. I am hoping for some relief and information when I finally see the neuro in October. Wondering how many others have these weird cold/burning areas in between normal warm areas.

[nide44]

MRI and nerve conduction (velocity) studies will not show small fiber damage, usually. The MRI shows large myleinated nerve damage, but the small unmyleinated nerves are too small to measure.
Also, in myleinated large fiber damage, it is sometimes difficult to ascertain whether the damage is in the peripheral system or in the central nerve system.
your facial symptoms, and not hands or legs - would lend a clue to look into the central nervous system, as well.

[savannah]

I have coldness and pins and needles. My hands and feet can get so cold it really hurts. I keep a heating pad in my office to warm up my feet when I'm working and last winter wore cashmere socks. This year I'll try the stuff hunters put in their boots and see if that helps. when I get them really warm with the hot pad it seems to break the cycle and they'll stay warm as long as the room isn't cold.
Small fiber is my diagnosis so far.
There is a auto immune disease that makes you cold but them your skin looks blue. If you have that symptom see a rheumotologist.

[Leslie]

Originally Posted by savannah

I have coldness and pins and needles. My hands and feet can get so cold it really hurts. I keep a heating pad in my office to warm up my feet when I'm working and last winter wore cashmere socks. This year I'll try the stuff hunters put in their boots and see if that helps. when I get them really warm with the hot pad it seems to break the cycle and they'll stay warm as long as the room isn't cold.
Small fiber is my diagnosis so far.
There is a auto immune disease that makes you cold but them your skin looks blue. If you have that symptom see a rheumotologist.

I also have a similar problem...my toes get very cold and hurt. I have a warming pad (actually looks like a door mat) that I use under my desk to keep my toes warm at work. It was a bit pricey but it was worth it. I keep it on all day and keep my feet on it, works wonders....

[Leslie]

Originally Posted by ssteague

I'm a new member hoping to get some answers. I have started having tingling, numbness, coldness and burning pretty much all over my body. It started with just coldness in my face a few months ago. I haven't found a lot about the cold sensations, but I know someone else must experience them and hopefully has gotten answers. I am seeming to baffle the doctors. I have already had blood tests and MRI, spinal tap. The nerve conduction is the only thing coming up abnormal.

Hi ssteague - sorry you have to be here..

When you say cold, do you mean cold to the touch? My toes sometimes feel like I have been walking barefoot in snow but they are not cold to the touch just the inside. Along with the hands, forearms, feet and shin area of my leg, I have the numbness on the left side of my face (only the cheek area) most all of the day. I do get the numbness and tingling in other parts of my body but only at bedtime, then most of the night. This night time numbness is all up my left side, on my left hip and around to the left side of my rear-end.

[ssteague]

[QUOTE=Leslie;358910]Hi ssteague - sorry you have to be here..

yes, it is cold to the touch. I just had a test for RA and lyme disease and will hopefully get the results tomorrow. It will probably come back normal as most everything else has. The coldness/numbness from my knees down to my feet worries me the most. That has come back with some nerve damage, but the doctors are in no rush to diagnose. I can't get in to the major hospital for a consult for 6 months.

[sbvcrn]

Hi
Actually my coldness feeling like it is burning...like I was standing in a sand storm and burning sand is hitting me BUT the areas in question feel very cold to the touch (husband verified). No blueness, redness, rash, etc. AND like I mentioned the areas above and below are normal temperature (warm). I also have that awful "tingling" like sand hitting me on feet, legs, hands and arms.
Many fabrics I can no longer stand against my skin when it is like this. Odd, too, sometimes it is worse than others. I like really soft, soft cotton or rayon.
Feel like I must be nuts but my husband has felt these weird areas...even one night when I was asleep (could my mind be doing that?) My local neurologist and primary care just seem to nod (yeah!) I am hoping something can be found even if it is bad so maybe something can help me. For that matter, all of us. Here's hoping when I seen the PN he will start all over and do everything.