all of my blood tests, which were extensive, i felt a few times like i had been bled out, and for that matter all of my tests except for emg/ncs have come back negative. I havent been walking except for run of the mill walking in a store, around the house etc because it has become much too painful to do. My walking has become much worse.

Hope I noticed that this thread was started back in Feb 2009, and I am guessing that the test did say you have PN because of some of your relies. Did you find out if it was motor, senor, and auto or more than one? Maybe you wrote it down before and I just missing it.

How long ago did PN started, I don't know. I think I had it for a long while but could not figure out what was causing the pain in my feet and ankles at that time. I went to a foot doctor because it got worse and she insisted in farther testing because she believe something else was going on. She wrote out a script for a EMG/NCV Test. It show that I have polyneuropathy (senisor motor) thing going on. This test was taken not to long ago.

How are you doing Hope? Are you able to find something to give you some relief?

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.

what kinda toxins were you exposed to

".....more fatigued that I used to be....."
Westie,
Try massive B12 methyl cobalamin sub-lingual minimum 5000 mcg/day for the fatigue factor.
(you cannot O.D. on B12, it is excreted like vit 'C')
PN will make you fatigued and seem like you are sluggish, legs leaden (like cement), entire body malaise.

Hi Trishann. I went back and read my original post here back when I was four months into my PN. It is now about ten months later. All of the tests including an EMG that I took back then came out normal, so I am still ideopathic. I was never really given any kind of diagnosis. Not too long after that I lost my health insurance for awhile and even though I got it back, it has been quite awhile since I have gone to the doctor. As far as my PN is concerned, I have had some changes. In June I took myself off the gabapentin as it wasn't working for me. My PN has gone from constant pain around a 7, 8 and even 9 to a current lower level of maybe 2 or 3. I used to have body wide pain at all times and now the pain is mostly centered in my legs, especially my left leg. My entire back, stomach and knee caps used to burn on fire, now instead I am experiencing more bits and pieces of pain in those areas during and flare up.

The flare ups come and go and seem to come on mostly at night when I am in bed. I know my hormones flare it up otherwise I can no longer pin point it to any one thing. Things seemed to have changed a bit, but with PN you can find yourself getting better or going right back to your worse period. I just don't take anything for granted and try and get through each day at a time.

Thank you for asking Trish. I hope you too are able to find something that works in giving you relief. Please keep us posted...

Hope I am so glad that you got your insurance back. Hope you see a doctor soon and maybe get something that can help. And you are so right, nights
are really bad.

Most of the time I will sleep with my MP3 player on just so I can get my mind off the pain, it helps some; and I sleep with a heating pad, but it has a saftey that turns off. I also had this special made pillow that you put between you leg, it just a foam cushion, which it helps sometimes.

I couldn't take gabepentin either, but Lycria doesn't give me the bad side effects and also gabepentin did not do nothing for me, but it does wonders for other. You have to just keep trying until you find something that works for you. Even though it doesn't take all the pain away, at least once in awhile you get some relief.

Trish

have MGUS. Diagnosed after PN discovered 5 years ago. I still get my yearly blood test and, fortunately at this point, it still is at an extremely low level. But, there always is the small little voice in the back of my head that can be brought forward when I read about a person dying from multiple myeloma.

Hi Nancy W,
I was diagnosed with anti-MAG neuropathy 7 years ago. I have tried IVIg (with improvement initially) and numerous oral medications. I would like to try Rituxan, but my insurance won't cover it. I am currently going down to Seattle to see a neurologist at Virginia Mason. Not sure if he will have anything new to offer, but at least he has taken care of others with this ailment. How are things going for you?
Best wishes,
NancyKay

I've had PN for 2.5 years.

I currently take:

1) Gabapentin- 600mg tablet (4x a day)
2) Lyrica- 100mg caps (3x a day)
3) Baclofen- 10mg tablet (6 tabs a day)
4) Methotrexate- 2.5mg tablet (8 tabs per week)
5) Folic Acid- 1mg tablet (1 tab a day)
6) Vitamin D3- 1000IU tablet (1 tab daily)
7) Vitamin B12- 1000mcg tablet (1 tab daily)

These are all for Peripheral Neuropathy/Auto-Immune Disease/Fibromyalgia (They think they are impacting one another to make the pain worse)

As for pain, my feet have every kind of pain you can think of, burning, stabbing, aching, tingle, pricking, etc. I also have some partial numbness in the bottom of my feet. The fibro causes me to get random aches and pains- sometimes feeling like I have been hit in spots- so tender even water in the shower, or a finger grazing them kills.

For about 2 years my Neuropathy kept getting worse, then they put me on Methotrexate and things started to improve. However I hit a plateau a few months ago, which I wish they would figure out how to break...I am at the end of my rope with this (living in perpetual pain is enough to drive you mental).