I really would like to know if you remember the exect moment when your PN had started? what was the reason? the situation? or maybe it was a slow process and you can't put your finger on the exect moment.
For me - it started one day, at work - I gave a presentation and in the middle of the presentation I felt this tinglings in my toes. I remember that I noticed it and one of my coulegues (mistake...) even told me that I looked sick. No special event before it, no virus, no any trauma. It started just like that... (In backgraund - there are new chemicals that I was exposed to, but no one of my doctors made the conection...)
I would like to read your stories.
(I know that my questions seems a like, but all this is very new to me and I can't stop thinking of my new situation. your support and coming to know you better help me a lot. I feel that you are my new friends and my "supporting family")
have a good day

Then i want to remember,i was aways having anybody i could
body tackle,i would. Please rub my feet or my legs,the kids
were young still and easy to catch. Ha. Than it was those alfull
cramps and spams. To don't touch them it hurts to bad. I think
when your on your feet for a living,who really knows...I can think of it now.
And i hate it. Sue

IN October of 2001 as i was starting to get respiratory infections and having trouble with coughing and shortness of breath and wheezing, i noticed that my big toe was numb. I thought it was an ingrown toenail doing it. I continued to have many respiratory infections and the numbness spread to entire balls of feet by 2003.

Slow process and can't put my finger on the exact time frame. I was so sick for so long with my intolerance's that I didn't realize was the problem. I had aches and pains for years--I remember trying to learn to crochet, my hands hurting so much, and my mother saying it was just because I wasn't used to it and the more I worked with it, the easier it would become. Believe me, it took me over 5 yrs to crochet this lap afghan and it is the only one I ever did. She used to tell me that I was too young for so many aches and pains, that I complain too much and that was in my late 20's, early 30's. By that time I was already in true malabsorption, so I am sure much of the "aches and pains" were my neuropathy in progress. My hip pain worsened in 2001, I remember it would come into my dreams and I would wake in terrible pain with tears running down my face, still do sometimes.

I think it is really difficult for some of us to pinpoint when it started. I think it sneaks up on us, we never saw it coming. It was minor little annoyances at times that we didn't give a second thought to at the time.

--almost to the minute; the start was that acute.

I was in the shower in the early afternoon of April 12, 2003, and began noticing a strange tingly/numbness between the fourth and fifth toe on my right foot. Within hours, it had spread all over the foot as a searing, burning pain. In three days, I noticed it in my hands; by day ten, when I was going in to see my first neurologist, it was all over my body, head to toe, with the exception of a small area around my larynx (which has never been affected--no idea why, but at least I can use it as a "normal" baseline). The progression was so fast I could actually feel it at times going up my side, climbing my face, going across my lips--incredible sensations such as I had never experienced anything like before.

Much of the rest of my story is well-known here--the extensive in and out-of-hospital testing, all of which was negative/normal; the parade of neuros in Staten Island who were stumped; my taking Neurontin, which did work to moderate the symptoms enough for me to start doing research (at the onset I couldn't eat, sleep, tolerate clothes or bedsheets), my beginning to drive my own further testing protocol and my visit to Cornell-Weill, where skin biopsy finally showed I had an extensive small-fiber neuropathy, and the slow and painful process to recover at least some fiber density and function, and to lessen symptoms (it appears that I was the vicitim of a post-infectious molecular mimicry autoimmune process, but there's never been any "direct' evidence of that; it's been likened to a small-fiber sensory Guillain-Barre, but at least it appears to have been monophasic).

HI Rina!
I can't put my finger on an exact day. I started feeling very tired all the time and had achiness for over a year. But I have so many other health issues that I kept putting the achiness on the back burner. Then finally this past Feb. I was hurting SO bad that I saw my reg. dr. and told him about it. He thought I was depressed! So he put me on Cymbalta, and that caused major stomach burning so I saw him again a few days later......in tears! I'm sure he thought I really was depressed when he walked in the exam room and I was sitting there bawling like a baby! But I was hurting! He said I needed to see a specialist so I made an appt with a Rheumatologist.....and he's the greatest! He did MANY tests and blood workups and then the nerve/muscle biopsy and diagnosed my Chronic Axonal Neuropathy.
I wish I could put my finger on an exact date and time it started. I've always wondered when it really started.

I'm not exactly sure but I can remember a year before always having calf pain and sometimes like hard to propel. I would also get cold feet where they would not warm up and like no circulation. I was a heavy exerciser so the calf issue I thought was from that. About 6 months ago when exercising I noticed extreme inner ankle pain/sore calf/foot. I stopped exercise and thought I had an injury so went to the ortho and he put me in air boot though no fracture then the tests began. From the ortho to other docs including the neuro,more tests to find out peripheral neuropathy. Through this my pain got bed rest pain for 4 months and now though in pain able to do more but it has also went into my other leg. I went to the pain clinic in ohio but now just trying to reabilitate on my own without the catheter or pain meds other then cymbalta.

Both my husband and I have neuropathy.
Here's my story.

I'm diabetic, and I was told over a year ago that the tips of my toes were numb (this was during a neurological exam at Cornell). I had no idea. I never ever touched the tips of my toes so there would be no way I could notice they were numb.

So I had absolutely no pain for 6 months. I go to the podiatrist, he cuts my toenails and uses a vibrating instrument on them. I jump out of the chair and he says "oh, you have feeling, feeling is good, we want feeling". I said 'are you serious, this is horrible". He went to explain that you don't want numbness, you want feeling" What I felt that day was what I would consider HYPERFEELING.

Well, when I went home, I got it full blown, buzzing, burning, pins and needles. I went nuts. Lasted about 5 hours.

I then started Methyl B-12 and I only get occasional burning. So I'll take this anytime over the pins and needles and buzzing. Drove me out of my mind.


Now here's my husband's story. His name is Alan.

When he was 45 or so, he felt something between his toes. He thought it was Athletes Foot. After it didn't go away, he went to a podiatrist who tested him and said "no, you have Neuropathy". That began a journey to various doctors who didn't know neuropathy from a hole in a wall. We found out that many things cause neuropathy. Only recently did we find out he has autoimmune stuff going on. Now 15 years ago, if we had found the right specialist and that specialist had ordered a spinal tap, maybe my husband could have gotten help sooner.

But he's on the IVIG and he says that exercise (in his case), lifting weights, doing the bike, helps his PN BIG TIME!!!

Hope this helps. Melody

This is all very interesting to me, too, Rina. I rarely talk about how mine came on because it is so wierd that I thought people would think I am a nut. I was having trouble with migraines. I had a terrible one one night and had to go to the Emergency Room. While I was laying on the bed there, all of a sudden I noticed that my feet were in extreme pain also, and that my toes were numb. I thought that my circulation must have been cut off and when I looked at my feet I expected them to be blue or black! But they looked pink and warm. The numbness and pain has never gone away, just gotten worse and progressed upwards some. I have always felt that the excrutiating migraine pain had made something "snap" in my body or brain, and now I can't get the pain turned off. Just a crazy theory.

HI Dakota!
I find your story amazing! At least YOU know when it started. I wish I did. I think mine sorta sneeked up on me when I wasn't looking! I just know it's been slowly getting worse over the past year. Maybe your bad migraine did cause your neuropathy......who knows where Migraines come from! Hopefully one day they'll get it all figured out for us....we can hope anyway!