[elsie]

I was diagnosed with PN in July and since then ,not only do I have pain and burning, but my feet get extremely hot to the touch. I have been forced to take my shoes and socks off while I'm out in public to relieve the pain from hot feet. Does anyone else have this problem?

[BEGLET]

Hi Elsie - I know for me - my feet are always like ice - even when its over 100!!!! (I dont feel cold in that heat - but my feet dont seem to get it) Maybe its the pain thats making them hurt??? I'm sure others will jump in!

[shiney sue]

I feel like my feet and hands or on fire and others say they feel ice cold,
and others times they feel cold am tols no they feel warm..And why does
it always seem to start at the feet now it's really baad in my hands.
PN effects people in so many ways..And there are so many kinds of PN
some hurt but most do,some days worse then others , What type of
tests have you had? Sue

[elsie]

I had all kinds of blood work which came back normal as did an MRI. The EMG and NCV findings showed PN "with predominantly axonal features affecting primary sensory fibers."

[dahlek]

blood tests you have had? Have you had a spinal tap done, and if so do you have a copy of the results?
Be sure to know where on the 'testing protocols' you are, or have had done.
Please read the following:
http://www.aafp.org/afp/980215ap/poncelet.html
http://www.lizajane.org/ And
http://www.neuroexam.com/content.php?p=2

These are probably your best outlines of what all should be tested for and why. The LizaJane worksheets are to be used to help YOU keep track of all that's being done [at times it seems very very fast and furious? others slower than turtles] and what else might or might not be tested because of prior test results - It is very hard to get any handle on the pain, let alone what all is happening to you! This stuff will help you get a grasp on the what's and maybe basic whys'....
Hope this helps and keep reading - you mite find something in others' prior posts that strikes a chord with your own instincts....Follow that internal voice of yours...I did, and I do believe it's saved me more than once! - j

BTW, last week while waiting at my NEURO's office for my appt, there was a lady who took her shoes off and was 'resting' them on top...I just said to her: 'Neuropathy?', answer: 'Yes' and I responded: 'Understand' - such a look of relief! At times I feel burning, and the feet are normal, others I feel frozen and they are warm. They can be both warm and BLUE at the same time. I simply try to keep them as comfy as I can and live thru the rest... Actually these days I cannot tell which is better or worse? Hot or Cold? Maybe another day.

[Alkymst]

Elsie,
Just like Kmeb, Sue, and Dahlek, my feet also run from very hot to freezing cold - the cold is almost constant now although there are times that my toes are freezing while the soles and tops of my feet feel as though they are on fire - all the result of the small fiber damage which doesn't show up on standard NCV/EMG exams. These exams measure affects on the large nerve fibers but the best measures of small fiber damage are QSRT and skin punch biopsies - only a few places like Mayo clinics, Johns Hopkins and I believe Cornell-Weill in NYC do the biopsies but they are well worth it for the info you can get.

There's an incredible wealth of info on this forum from personal experiences together with extensive literature searches so you'll find an answer for just about anything or find someone who has the same symptomology - it just takes some time and patience.

It always seems a bit ironic to welcome someone to the forum because it's almost always indicative that they too are suffering from PN but welcome nonetheless - you came to the right place.

Alkymst

[elsie]

I appreciate everyone's help and advice. I have not had a spinal tap. I had blood sugar levels checked along with b12 and vit.D. I'm not sure what else. I will ask for copies at my next visit the end of Jan. I do not like my neurologist and I had to wait 3 months to get in to see her. She basically said my PN was idiopathic and sent me out the door with a prescription for lidocaine cream. It does not help in the least.

[MelodyL]

Hi Elsie:;

First things first. Get a new neurologist, (hopefully one more versed in PN). I'm a diabetic and my feet (only when I'm stressed), burn like hell. But I take my methyl B-12 every day, and usually have no problem, thankfully!!!

My husband has been diagnosed with neurpathy over 15 years now. They believe he has CIDP, (he actually thinks he has lyme disease). This is something new now that he is mulling over in his head.

He took the blood tests for Lyme about 2 years ago. He did test positive for 2 out of 5 of the things, but the doctor said "no, you don't have Lyme Disease".

Last week he was watching the Discovery Channel and he saw a case where a girl had bad arthritis and other symptoms and all her lyme disease blood work came back negative. She then went to Spain and her roomate had the same symptoms and her roomate said 'my god, you have what I have, you have Lyme Disease". The girl responded saying "no, they say I don't have it, they took a vial of blood and I tested negative". Then the other girl said 'one vial??? they have to take 3 vials, because it shows up in various places in your body". So the girl went to a doctor and they took blood from various locations on her body, and guess what?? Test came back positive.

She went on antibiotic therapy for over 1 year and all her symptoms disapperared.

So now my husband is going to ask his doctor (when he goes for blood work right before his operation on his foot), he's going to say "I want the correct test for Lyme Disease", and he'll tell his Dr. Fred about the program on the Discovery Channel.

I have no idea what my husband has. If it's CIDP, or whatever. All I know is that if they ever do the test, and it comes back positive for Lyme disease, and this could have been prevented!!!!!, well, I just don't know.

So get a better neuro. You deserve it!!!

Melody

[Alkymst]

Elsie,
I can only echo Melody's sentiments - BY ALL MEANS FIND A NEW NEUROLOGIST - you definitely need someone who understands PN and thinks beyond a cream for a treatment program. She may have concluded that you have idiopathic PN simply because she doesn't know what to do now or next. You'll have a wealth of suggestions from people very soon.

One test that can be very useful is an oral glucose tolerance test OGTT, 2hrs at a minimum and preferably longer. ~30-40% of supposedly idiopathic PN cases have now been diagnosed as a prediabetic form of PN that can occur long before a frank presentation of diabetes - the IGT or impaired glucose tolerance is a predominately sensorimotor SFPN (small fiber peripheral neuropathy) and many times is painful. The OGTT is the best way to identify these cases - they are not caught by a fasting BS or hemoglobin A1c - there are many documented cases of patients w/ normal fasting BS (<100) and hemoglobin A1c values <6 who have abnormal OGTT @ 2h, i.e. >140 but <200 who suffer w/ PN. Some of the other confirmatory diagnostic tests for SFPN include QSART (quantitative autonomic sudomotor reflex test), QST (quantitative sensory testing) and skin punch biopsy.

Also, SFPN is not diagnosed via needle EMG (electromyography) or NCV (nerve conduction velocity) studies - these tests are much more useful to document abnormalities in the larger nerve fibers.

Hope this is useful and if I can help you, by all means pm me - I know you'll get a great deal of information from other forum members too.

Alkymst

[rose]

And while you are looking at other possibilities, you can safely take B12. Important to have enough---that and other basics are on my site (link below).

rose