Well, I have noticed sx's for less than a year. (it will be a year next March?)

I only had some burning pain briefly, and then it went away. Other than that I am not in constant pain.
And I do get some face pain, and migraines.

I think the face pain may be related, the migraines aren't.. I've had those for years.

My main issues are numbness and weakness.

Almost a year ago when this started it was weakness in my upper extremities.
(sparing my legs)

Now, I have problems with total lack of feeling in my feet that comes and goes, and difficulty walking.

I think my arms may be alright though?? I haven't dropped any more cans of soda on my computer in a looong while.

However, since there is now difficulty walking that wasn't previously there, we are assuming I am progressing (it was sensory greater than motor)

i have had PN for over 7 years now. It has progressed steadily from my big toe on both feet to just below the knees and in my hands past my wrists. In the beginning it was very painful in my feet, stepping on a pebble was like stepping on an ice pick. My feet and legs eventually progressed into a deeper degree of numbness which helped the pain , along with many other things i have tried to differeing degrees of success, tens, interferential therapy, vitamins, wellbutrin, neurontin, lyrica, topamax, paxil, effexor, trazodone. Except for wellbutrin which did help the pain, the other drugs i did not react well to. Recently in the last 9 months the pain has started to ratchet up again in my feet especially.

Because of deep numbness in my feet my balance is very bad, ironically i also feel like i am walking or standing on broken bones even through the numbness. 20 minutes is it for me standing. I also drop or knock over a lot of things with my hands.

I have waged a long war with PN and feel that im losing badly.

Since the invention of pain
(& the wheel, & fire, & flint tools)
:-(

Did they ever give you some kind of diagnosis? Curious.

diagnosis is sensory motor primarily axonal with demyelination peripheral neuropathy. Official cause is ideopathic, though im sure it was caused by toxins.

Just curious if you ever had any DNA blood testing done for a hereditary syndrome?. Anyone else in your family have anything similar? Thank you.

no one in my family has had anything similiar from what i can find out.....i have asked around at family reunion and from relatives but nothing has come up.

Thank you. Have you ever considered having DNA blood testing for CMT that they can now test for? There are many types and sub types. A spontaneous mutation is considered rare but it can and does happen. Just a thought.

I've had PN about three years now.

Diagnosed as SFN - alcohol/liver disease is the "smoking gun" no other explanation forthcoming despite lots of blood tests and EMG.

It was on and off for a year or so but now progressed to permanent. I get burning mainly in the toe/ball of feet but then for no reason apart from perhaps the temperature (?) it converts to numbness. Also more fatigued that I used to be - but not sure this is related.

I take no painkillers only supplements -not sure they do anything but you have to try.

Hello. Your symptoms and mine are very similar and I am getting help now and seeing improvement. I was diagnosed 10 years ago with monoclonal gamopathy and noone suggested treatment. So I got progressively worse - all the symptoms you mention and getting harder to walk (and a few falls and tripping over my own feet). Finally saw a neurologist who after many fancy blood tests, diagnosed me with antiMAG and put me on a regime of plasma exchange (plasma pherisis). That was 4 months ago and I am seeing improvement - not huge dramatic improvement, but I am walking better and I believe I have more feeling in feet and legs. The same neurologist is now suggesting Rituxan - don't know if I will do this or not yet.
Hope this info helps you to know that there is new information out there and I hope you can also find some help. REgards, Nancy W.