What was your first symptoms? And how much has your neuropathy progress?
 

I am curious what was your first symptom? How fast and how much has it progress over time?

I just received a diagnosis of neuropathy with no known cause and I am very scared.

My symptoms started as numbness and tingling in my face, arms and legs. Now only 6 weeks later, it has already turned into burning pain. My muscles also started to twitch and I feel shaky and dizzy.

I had an occurrence in May of 2012, drove across town and had difficulty getting out of my truck. The dr thought it was a virus and treated with prednisone. Ever since my ck has remained elevated. I have balance issues and worry about slipping on ice during the winter. Along with the tingling and burning on my hands and feet I have sensitivity to heat and cold. The neuropothy has not progressed significantly but have had some loss of muscle strength. I am unsure if I can gain it back. I don't know if this helped but would like to talk about Neuropothy.

Are you taking any RX drugs? Statins for cholesterol?

CK levels are elevated by statins, in some people.

There are muscle disorders that can be tested for. Polymyositis and dermatomyositis are examples. Also low potassium will cause weakness.

Here is an article about it:
http://www.medscape.com/viewarticle/572269_4
If you are not signed in with Medscape, you'll have to do that in order to read this article. Medscape is free and often a good source of medical and drug information.

Mine technically started in childhood with clumsiness, an odd gait, high arches, inability to run, etc. as I have a hereditary neuropathy. But these were ignored, and I was just thought accident prone, clumsy and lazy.

The classic neuropathy symptoms started in my early 30's with numb toes. That progressed to above my ankles by my mid-40's when I saw a neurologist at the insistence of my podiatrist. I had several foot infections and he was shocked at the profound loss of any feeling in my feet. He also recognized the gait as being characteristic of CMT. Actually my podiatrist was a better diagnostician than my neurologist in some ways, at least he was more familiar with the symptoms.

During this time I had moderate leg pain but attributed it to varicose veins.

I had also been evaluated earlier and found to have carpal tunnel in both hands, which was not exactly true. I have nerve entrapments all over and it is part of the disease process, not a separate condition. The podiatrist was angry and felt that this should have been more rigorously pursued combined with my other issues. My arms fall asleep at night and wake me up. My hands are not very useful until the afternoon, I cannot hold a pen or do needlework in the morning, or they instantly go numb.

Now the numbness is above my knees, I have constant strong, aching pain in my arms and legs, sometimes sharp pain in my feet,and quite a bit of muscle loss in my hands, arms, feet, and legs. I also have an all over skin burning sensation which is usually limited to my left thigh but occasionally spreads to the entire thigh and hip areas both sides. Very uncomfortable and affects my choice of clothing.

In my case this has been a lifelong process, I am 52.

I was briefly on statins for dangerously high triglycerides. I was completely unable to walk without falling and the pain was worse. I went off them at the advice of my neurologist. I have since found that there is a link between PN and high tryglycerides, so I don't worry much about it.

I agree with the post above, I can remember being a child and having issues with random back pain. My mother had numerous MRI's done and nothing ever showed up. I am now 32 years old, and I can't remember a day without some sort of neuropathy or horrible pain somewhere in my entire body.

Hi ibxm,

My neuropathy came on during a period when I was having many other health problems.

I did not notice it.

Well, I noticed:

*Tripping and falling
*Inability to ride a new bike (I thought there was something wrong with the bike)
*Difficulty in taking long walks, especially walking up hill.
*Getting dizzy and falling out of the shower, when I closed eyes to rinse my hair.
* Lots of arthritis pain, leg cramps, pain generally.

I went to see a neurologist about a constant headache (which I still have) and he SAW that I had 'foot drop' couldn't walk straight, got dizzy when I closed my eyes.

He ordered a bunch of tests, and until they were done (after Christmas) I feared a brain tumor or MS or something.

The EMG showed profound neuropathy. That was four years ago.

It hasn't spread at all. No reason or cause has been conclusively found. Lots of things have been ruled out. I had EEGs, a spinal Tap, 3 MRIs and two CT scans then, and I've had them since as well, recently (not the spinal tap).

I was so afraid the neuropathy would spread and I would be wheelchair bound. But that hasn't happened.

I can't give you any ideas or suggestions. My Duke neurologist confirmed that the neuropathy is still profound. He has no idea why I have it.

I do have a copper deficiency which he just found. Copper deficiency is extremely rare. It will cause hematological and neurological problems.

I am anemia for no known reason, and of course I have profound PN. But I would think that a copper deficiency would cause the PN to spread to the rest of my body, but is hasn't in four years. And of course I don't know.

I take Cymbalta for pain, and Naproxen Sodium (Aleve).

Hugs, Elaine