If you have a toxin or metabolic problem...then PN will be not localized to the feet and legs.

Localization should be looked at as coming from the back.
Or circulation. If you smoke, I'd be looking at circulation.

Diabetic PN does start in the feet. But other causes/triggers do not localize just there.

My PN was thyroid induced early... and it was not only in the feet.

I don't smoke, but I am overweight and have been for years. Although the basic glucose tests came back normal, after reading things on this board and elsewhere, I intend to ask for tests for impaired glucose tolerance -- i.e. "pre-diabetes". There are some reports on the internet that as many as 40% of those people originally labeled "idiopathic" turned out to have IGT.

We'll see...

A month from the toes being affected to the ankles and hands [when I went to the ER] up to the knees and the elbows. while waiting...
Took me a year and 3 neuros to get the diagnosis of CIDP [Chronic Inflammatory Demeyelinating Polyneuropathy] After that diagnosis further progression was slowed to less than the movements of tectonic plates? Treatment for this is expensive as in $$$$$ mega, but, I'm lucky with good insurance? Before then tho it was downright scary. BUT....Many issues can come into play and tests are extensive! You will be MRI'ed, CT'ed and blood tested out the wazoo. On the stickies above there is a reference to that and many other neuro issues that can cause your problems.
http://neuromuscular.wustl.edu/alfindex.htm This index cites ALL possibilities, and it can be mind-boggling? It takes Time and copies of your own test results in-hand to even begin to try and learn about what all is going on with your body. I do know different states have different rules about YOU the patient getting copies, well, just ask your doc for copies of the tests of all sorts and YOU do some research on them! You mite be surprised about what all you can find out about yourself in this quarter. Test results are the most useful tool to help YOU find out what all is going on! That is my most HUMBLE opinion?

OK Did you call your docs???? Say yes or no...and why.
In the meantime don't panic - good things for the interim? - j

Mine started in my hands, with ulnar neuropathy 10 yrs ago. About 2 years after my hands, then it started in my feet with numb toes, burning feet. It took me 6 yrs to figure out what was going on, and I started taking B12, which has made a huge difference. My neuropathy happened because of celiac/gluten intolerance, and going years without a diagnosis. Ten years after the diagnosis of carpal tunnel, my toes do not go numb, my feet don't burn too often, my hands have improved some, and I am not on pain meds. With luck, you can slow the progression, sometimes stop it.

Checking fasting insulin (as well as glucose) is often very
revealing of insulin resistance.

When people have insulin resistance often the fasting is glucose is normal or even a bit low, until it gets bad enough for
pre-diabetes to appear.

So checking the fasting insulin level is useful. (do not engage in any exercise before this is taken, as it will skew the result).

If elevated then you can start with supplements that help insulin work. And there are many of those that do work.

My neuropathy started in my feet more than 15 years ago, but was mis-diagnosed by my HMO GP for years. He thought it was either being on my feet at work, then 'all in your head', then sent me to a podiatrist who suggested orthopedic shoes and inserts.
It was dx'd in 1999 when I was hospitalized for pancreatitis.
Since then, my current PCP, & my neuro & I, have worked together to decrease progression and aleviate pain- thru meds and supplements. My EMG & NCV in July, showed little to no significant difference in tests done 4 yrs ago.
I think that supplimenting B12 has been the most effective for me.

Were you diagnosed with anything or was has it been "idiopathic" the whole time?

You're supplementing with B12... were your B12 levels low?

Thanks,

Ed

I didn't even know my feet were numb.

Six years later, it is in my arms and autonomic nervous system.

That said, I had Lyme and have Sjogrens, oh and got whacked by a truck head on at 55mph.

It is hard to compare from one person to the next.

IVIG helped my numbness and 'falling asleep sensation' tremendously.

One year and 10 months in I have had little progression - it all came on in an onslaught, pins, needles, burning, weakness etc in hands and feet and now it is pretty much the same with occasional flare ups of different symptoms and occasional periods where it feels slightly better - but nothing substantially worse. Dr says it will get worse but doesn't know when. IVIG may or may not be helping, hard to tell. It's idiopathic. Basically I think there is really no way to tell. All you can do is the do the best you can to take care of yourself - lower your stress, get rest, try to eat healthy, try different meds/treatments etc - and cross your fingers!


QUOTE=cyclelops;414173]I didn't even know my feet were numb.

Six years later, it is in my arms and autonomic nervous system.

That said, I had Lyme and have Sjogrens, oh and got whacked by a truck head on at 55mph.

It is hard to compare from one person to the next.

IVIG helped my numbness and 'falling asleep sensation' tremendously.[/QUOTE]

No one can really give you an answer on how fast neuropathy can progress. First there is the issue of what is causing it. If you can treat the cause you may be able to arrest the neuropathy.

I didn't realize I had neuropathy until I was presyncopal due to hypotension and bradycardia, and it was already thru my autonomic system. After skin biopsies, they found I had sensory neuropathy as well. I have it in my legs to above the knee, and in my hands. A muscle biopsy of the bicep shows neurogenic myopathy which means it is up there too. I was not diagnosed until it was advanced because I didnt have burning feet.

Their thought is autoimmune, and I get IVIG, which stops the numbness and falling asleep feeling. I have had Lyme in the past. Post lyme issues are treated for the most part, like fibromyalgia or autoimmune disease. Lyme is known to cause PN and dysautonmia. I would not wish dysautonmia on my worst enemy. I also carry a seronegative Sjogren's diagnosis. Doc at Hopkins told me half of Sjogren's pts. are seronegative.

PN is rather unpredictable. Take the best care of yourself that you can and search for a cause.

Good luck to you.