Lena-marie
09-30-2006, 12:34 PM
Hi there, it seems my legs and feet get a really bad burning raw sensation when its cold! why is this and could it be something elses besides pn? my dr's of course are stumped and I got a bunch of bloodwork yesterday drawn! I already had all the workups for pn emg's everything and all negative of course...lastyear!!! Then it went away for like 9 months completely! weird....any suggestions???????????
Lena :wave:
Lena :wave:
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SarahNina
09-30-2006, 02:26 PM
I had an interesting conversation with my GP the other day. He said that people with vascular or circulation problems generally feel worse in the cold because cold constricts the veins (and everything else). It seems to me that for that reason it would make sense for people with diabetic neuropathy to feel worse in the cold. Do you have diabetes?
I actually feel significantly better in the cold (I have idiopathic small fiber PN--no diabetes).... another mystery waiting to be solved.
I actually feel significantly better in the cold (I have idiopathic small fiber PN--no diabetes).... another mystery waiting to be solved.
Lena-marie
09-30-2006, 03:36 PM
Hi sarahnina! Thanks so much for the reply, No I don't have diabetes as of last year when I got all my blood work then, I just got a bunch of blood drawn yesterday so we'll see...and my neuro said my circulation seems perfect. I also asked about the vascular thing, when I wear jeans it feels like sandpaper..I HATE the feeling...It went away for 9 months too..who the heck knows what I have some odd thing thats forsure, Can I ask how did you know you got a small fibre neuropathy? I had a emg and nothing.
Thanks sarah!!
Lena:wave:
Thanks sarah!!
Lena:wave:
SarahNina
09-30-2006, 11:32 PM
Hi Lena-Marie,
I also had normal EMG/NCS (small fiber damage doesn't show up). My diagnosis was made based on my symptoms which are consistent with small fiber damage. For starters I have a deap seated ache on the soles of me feet when pressure is applied and lots of burning which is classic of small fiber PN but I know a lot of people with large fiber damage have buring as well. I'm confused about that part. I also frequently feel a pressure in my feet as if there were turnicates around my ankles causing my feet to fill up with blood. I only experience pins and needles in heat (water or weather). As we all know, symptoms can vary so much from individual to individual. My pain is also perfectly symmetrical. I've been tested for just about every known cause and I'm negative on all tests. I also had a normal thermal and vibration sensory test which tests the extent of small fiber damage (although not really reliably).
My neurologist wants me to consider going to Johns Hopkins to get a small fiber nerve biopsy (only a few places in the country do it) because I'm so young (25). She's perfectly confident that I have the correct diagnosis but thinks that maybe it would provide useful information. I forgot to ask her if the biopsy would show any regrowth if it's there.
I was misdiagnosed with plantar fascitiis for 3 years. I only figured out what was wrong with me after an MRI confirmed that I did not have PF and the orthopedist referred me to a neurologist. I saw 3 GPs, 2 podiatrists, 3 orthopedists and 3 neurologists before I found someone who really knew what I had.
I hope this helps.
I also had normal EMG/NCS (small fiber damage doesn't show up). My diagnosis was made based on my symptoms which are consistent with small fiber damage. For starters I have a deap seated ache on the soles of me feet when pressure is applied and lots of burning which is classic of small fiber PN but I know a lot of people with large fiber damage have buring as well. I'm confused about that part. I also frequently feel a pressure in my feet as if there were turnicates around my ankles causing my feet to fill up with blood. I only experience pins and needles in heat (water or weather). As we all know, symptoms can vary so much from individual to individual. My pain is also perfectly symmetrical. I've been tested for just about every known cause and I'm negative on all tests. I also had a normal thermal and vibration sensory test which tests the extent of small fiber damage (although not really reliably).
My neurologist wants me to consider going to Johns Hopkins to get a small fiber nerve biopsy (only a few places in the country do it) because I'm so young (25). She's perfectly confident that I have the correct diagnosis but thinks that maybe it would provide useful information. I forgot to ask her if the biopsy would show any regrowth if it's there.
I was misdiagnosed with plantar fascitiis for 3 years. I only figured out what was wrong with me after an MRI confirmed that I did not have PF and the orthopedist referred me to a neurologist. I saw 3 GPs, 2 podiatrists, 3 orthopedists and 3 neurologists before I found someone who really knew what I had.
I hope this helps.
Lena-marie
10-01-2006, 11:31 AM
Hi again, You know my feet almost feel the exact same, as if they are literally overheating when I have sneakers w/ socks on or boots w/ socks on..I was out last night and my legs were like ice and my feet like fire..how odd huh...I wish I knew what it was. I was in a Bad accident back in late april but all I have is some herniated and bulged disks NOT impingng any nerves so...and they are in my Cervical spine which has no affiliation with my legs and feet so my neuro says..which I know is true. but I asked about small fibre neuropathy and asked about the thermal test and he laughed and said they do those hoccus poccus tests at the universities..LOL I was gonna strangle him..lol Can I ask is it only in your feet??? not legs? also what exactly does the thermal testing do? Do you go in a cold room? I thought I read this...not sure though..
Hope we get answers...
Lena:wave:
Hope we get answers...
Lena:wave:
SarahNina
10-01-2006, 07:18 PM
Hi Lena,
Well, the sensory tests for small fiber nerves are considered experimental by most insurance companies. My neurologist did not use the results to diagnose my condition. In fact, like I said my results were normal. People without SFPN can have abnormal results and people with SFPN can have normal results quite often. In theory it can measure the degree of damage. I wouldn't feel too badly if you can't get this test done. No, they don't put you in a cold room. They strap a little box to your foot and it is set to different levels of cold and you would need to push a botton if the box got cold. The same goes for the vibration test, but a knob is placed on the big toe and the patient pushes a button when he/she feels vibration. These are the only 2 sensory tests they seem to use that way. I am really intolerant to heat and was hoping they' d put me in a sauna like room and measure what happens to me. That wasn't the case.
So, is your neurologist saying that small fiber PN is hocus pocus? or just the test? The first neurogist I saw did an EMG/NCS and it was normal. In his report he said that peripheral neuropathy was ruled out. As you can imagine, this really angered me, especially after it was obvious that I had some kind of nerve damage.
Yes, my PN is only in my feet. I thought I had symptoms in my legs and hands but my neurologist doesn't think that those symptoms are related.
There is a nerve biopsy that can confirm small fiber PN. I haven't had it yet. My neurologist doesn't think it's necessary for a diagnosis and as far as I know it doesnt' effect treatment. Not many hospitals do them.
I'll read your post again and see if I can provide anymore help.
Well, the sensory tests for small fiber nerves are considered experimental by most insurance companies. My neurologist did not use the results to diagnose my condition. In fact, like I said my results were normal. People without SFPN can have abnormal results and people with SFPN can have normal results quite often. In theory it can measure the degree of damage. I wouldn't feel too badly if you can't get this test done. No, they don't put you in a cold room. They strap a little box to your foot and it is set to different levels of cold and you would need to push a botton if the box got cold. The same goes for the vibration test, but a knob is placed on the big toe and the patient pushes a button when he/she feels vibration. These are the only 2 sensory tests they seem to use that way. I am really intolerant to heat and was hoping they' d put me in a sauna like room and measure what happens to me. That wasn't the case.
So, is your neurologist saying that small fiber PN is hocus pocus? or just the test? The first neurogist I saw did an EMG/NCS and it was normal. In his report he said that peripheral neuropathy was ruled out. As you can imagine, this really angered me, especially after it was obvious that I had some kind of nerve damage.
Yes, my PN is only in my feet. I thought I had symptoms in my legs and hands but my neurologist doesn't think that those symptoms are related.
There is a nerve biopsy that can confirm small fiber PN. I haven't had it yet. My neurologist doesn't think it's necessary for a diagnosis and as far as I know it doesnt' effect treatment. Not many hospitals do them.
I'll read your post again and see if I can provide anymore help.
SarahNina
10-01-2006, 07:23 PM
Another question...
Do your feet actually feel hot to the touch or is it just a sensation?
Do your feet actually feel hot to the touch or is it just a sensation?
Lena-marie
10-01-2006, 09:04 PM
Hi sarahnina, and thanks for the replies, It helps talking to someone who is going through what I am, at times I feel like i'm all alone w. this awful affliction. I am in my early thirities and I feel at times as if I am 80, my neuro is arrogant, and he pretty much dismissed me w/ the whole PN thing after he ruled out MS! I was in a bad automobile accident in late april and it seems to have disturbed my whole central and peripheral nervous system. It was a Bad collision, some idiot kid 18 pulled right out in front of my Suv, I could have killed him..lol I was in total shock at the time..and I wasn't wearing my seat belt like an idiot..I'm lucky to be alive. anyways this awful burning in my feet feels like Hot coals..its awful. lastnight I had to take my boot off and sock and let my one foot breath..lol My fiance was like your nuts..I was like well my damn foot feels like its literally on fire. what do you do for shoes?? I'm in Pittsburgh, pa so its getting cold here already and I started wearing my boots again, all summer I wore flipflops all the time and my feet felt good, till beginning of august and boom my burning is back..legs, feet, and hands not bad in the hands though..real weird stuff, I was wondering if it may be hormonal??? like endocrine related somehow?? what do you think?? I go see my obgyn tomorrow for an annual. I wonder if I have some cysts on my ovarie? and this could be causing this? i read on here somewhere, some lady had this same thing and she had a cyst...dunno I feel like i'm going insane at times...one min its soooo bad then its not that bad then its awful...its like a yoyo up and down...
your in my prayers..
godbless, Lena:wave:
your in my prayers..
godbless, Lena:wave:
Lena-marie
10-01-2006, 09:06 PM
BTW when they are acting up and burning, I take my shoe off it feels like sooo hot to the touch. and its red underneath...real odd..
SarahNina
10-01-2006, 10:22 PM
Lena,
As for shoes, I try just to wear sandals. I'm not sure if they help because they put less pressure on key points on my feet or if they help because my feet are kept cooler. I plan to wear sandals in the winter also. I'll keep some at work and change when I get there.
I don't know much, but I know the fact that you are experiencing actual temperature changes in your painful feet is an important symptom. From what I know that DOES NOT sound like small fiber PN. I could be wrong--check into it for yourself. I'm sure you've shared that with your neurologist.
As for shoes, I try just to wear sandals. I'm not sure if they help because they put less pressure on key points on my feet or if they help because my feet are kept cooler. I plan to wear sandals in the winter also. I'll keep some at work and change when I get there.
I don't know much, but I know the fact that you are experiencing actual temperature changes in your painful feet is an important symptom. From what I know that DOES NOT sound like small fiber PN. I could be wrong--check into it for yourself. I'm sure you've shared that with your neurologist.