Welcome. It will be interesting to find out more about you. Family history, what kind of tests you have had, etc. Thank you.

Hi yes it certainly does change your life, Go through the stickies here great place to start. This is supposed to happen to other people right? The toughest bit is acceptance, that takes time and only then you can truly deal with the condition, good luck

I would think it too early, after a few weeks, to think it likely to be with you for the rest of your life, since there are many causes of neuropathy. I would pursue thorough investigations. Perhaps the underlying condition can be discovered and something can be done.

True... all the stuff I've been reading about was pretty depressing and giving a poor prognosis for idiopathic neuropathy (basically "we don't know what the hell is going on, you just may well be stuck with it"). My neuro says that if there's nothing pathological going on, it'll probably just go away over time. Ugh, who knows?

So far the following tests aren't showing anything abnormal:
serum immunoelectrophoresis
ANA
ESR
fasting blood sugar
heavy metals
serum B12 (was in the 600s)
CRP
Lyme (though I know there are some issues with the standard testing)

Have a lumbar MRI (due to history of low back pain) and EMG/NCV coming up in a few days. The neuro also ordered physical therapy which is great, I wish I had done this ages ago for my back.

Oddly enough my symptoms, which have been getting worse in the last few weeks, got a lot better overnight... much less numbness and I can actually walk properly, whereas before was hard to walk w/out a limp. It's mostly the left foot/leg, have only mild numbness in the rt. foot. It has had the tendency to just get much worse overnight, I just woke up one day and my foot was all numb, woke up another day and the whole leg was numb. Now I've woken up and I have a lot more feeling in the leg and foot, less hypersensitivity.

I have a lot of weird issues with regards to my lower back which makes me think that there is basically nerve compression going on: left hip higher, longer left leg, sacrum rotated to the left,extreme tightness in muscles in lower back, sacrum, hips. Plus a leg injury/muscle strain in the LEFT leg that had me limping for weeks before the onset of numbness. How this can all be definitively tied to the PN I don't know... maybe the MRI will show something? And how I would go about straightening it all out is a mystery as well. So far I am cautiously optimistic about the improvement I am feeling in the last few days.

There is also Heriditary Neuropathy with Liability to Pressure Palsies (HNPP). Here is an interesting site concerning it:

http://www.hnpp.org

This is the opposite of CMT1A. There is a deletion with HNPP and a duplication with CMT1A. The part of getting numb but then you get better is a thought as far as HNPP. But only a thought.

DNA blood testing would give you the answer for this as well as the types of CMT that they now can test for. However, with CMT, you do not get better. It is progressive. http://www.athenadiagnostics.com

You sound similar to what happened to me. Came on nearly overnight but mine started with pain in the toes like I had walked on hot rocks, and some foot swelling. Went to the Neruo and he feels I have a pinched nerve in my back. If you have back problems, that will probably be your diagnosis as well.

I highly recommend you look at the posts for the B12 suppliments and get one. After I saw the neuro I bumped my intake of the suppliment (he recommended B12, B6 and Folic) and almost overnight my feet felt better. Hoping that continues.

Best of luck to you. I hope the MRI finds something amiss. That sounds horrible to say but at least then you know what is up vs. unknown reason for PN.

dave

Thanks everyone for the replies!

I actually get some swelling in my toes, and they get warmer than the rest of the foot-- it's really odd. It feels like someone is tying a rubber band around the bottom of the toe, and then it becomes redder and warmer than the rest of the foot. It's all so bizarre, I started another thread since getting my EMG results.