back to history...
 

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

Longer
 

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.

I, on the other hand, can pinpoint it--
 

--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!

I really believe that for some of us, something happens to make the brain just freak out and start interpreting pain signals in a wacko manner. I think a contributing factor for me was going through a year and a half of terrible migraines with almost no medicinal relief until we finally hit on a drug that worked to prevent theml Just way too much pain. I think pain begets pain. It is a weird story, though, and I've learned not to tell doctors because they act like I am crazy.

oooh, i like this thread. It reaffirms my hope that someday I'll meet someone having a similar story to mine (you know, to better share notes with)!

So, the current diagnosis is ideopathic small fiber sensory neuropathy with the primary being PAIN!

It started when I was about twelve and was assessed as 'growing pains'. It was only in my legs and from the mid-calf down--but not to the toes, just to mid foot. It only happened in the evening (around bed time) and only a few times a month. I used to ask my stepfather to 'rub the pain out' as massage relieved symptoms while it was happening. I'd somehow manage to fall asleep with the pain and it would be gone in the morning. I also occasionally got burning feet/cold feet. All of these symptoms were/are always bilateral.

The pain is an inside pain that defies description but radiates outward seemingly feeling like from it comes from the bone. It's not acute like I paper cut but constant [like bad menstrual cramps in my legs, I guess] and every bit as discomforting and disruptive to concentration/life.

About 4 years ago the frequency increased and became at first every evening, and then it turned into every day, all day.

I currently have no abnormal finding in the EMG/NCV but my sensations are less in the foot area when it comes to the tuning fork thingy and the safety pin.

Here goes...
 

... since we are swapping war stories..here goes mine, and like Dakota says ,I hope none of you will think I am disturbed. It is 10:30 pm I was lying in bed for a good nights sleep , when a strange warm flushing sensation started in my toes and progressed upward through my body to the top of my head. This happened within 30 seconds beginning to end. It left me practically breathless and disappeared in about 15 minutes. When it was gone I was left with 2 burning bands about my ankles for the rest of the night. The next morning I felt like the life had been literally sucked out of me. Wala! SFSN ,SO THE NEURO SAYS. This was April 2007. Boys and girls the whole incident seemed as if an alien was taking over my body. That's my story and I'm sticking to it...Tom:thud:

HI Dakota!
I have wondered if they years of Interstatial Cystitis pain and Barrett's Esophagus pain had anything to do with the Neuropathy pain I'm dealing with now?? I always trugged along with all the pain and kept going on in life with raising my son and working etc........but there's always been pain in my life. That pain always interupted my sleep and I'm sure some how it's defined who I am today......because pain makes you strong. My husband always tells me that he could never have gone thru all the pain I have......but I tell him sure he could have....we all do what we have to do.

HI Hurty! Welcome!!
WoW sounds like you have had years of this crappy Neuropathy pain! Sorry to hear that! I've just had the worst of mine from this past Feb., but Lord knows I've got other pain in my life and have for the past 30+ yrs.
I hope you are on some pain meds that are helping with your pain. I don't know what I'd do with out good pain meds! Take care!

Hahahahahaha! Tom, that is a great story. I am so sorry you have PN, but you might get the prize for the strangest onset. And Hurty, 12 years old? Isn't it remarkable how none of the textbooks or articles mention this type of thing. Here we are with all of these interesting phenomena, and no one has any idea.

Dakota
 

you are absolutly right. Here we have a nice collection of stories on PN and different stories on onset, but it seems that our doctors or neurologists didn't here about them. I think we can write a book ... something like "our story..." or so.
I would like more people telling there stories. It is so strange, all this.
And - if you are thinking of Tom's story, mine was almost the same, but it took several days/weeks and not in such a short time, till it reached where it reached. What makes me think that it can be a virus...
(I hope all of you understand my broken English....)

It was the 6th of March 2005...
 

It was cool in the morning so I dressed warmly. I was running around doing errands as I was prepering for a houseguest. I remember I was excessivley hot. Hotter than I had ever been before,and I was sweating more than I ever had. I felt the most terrible painful stabbing in both eyes, I thought I would be blind by nightful. I had that terrible stabbing/electric pain for 3 days in my eyes. Then it went away,but the back of my head felt the same pain. It was the worse burning pain ever. Clearly not normal. By that time I knew something horrible had happened to me.

I felt it moving down my arms,torso,back,and finally into my legs. I checked myself into hospital,and after a few days in there and all my blood tests coming back normal,and my neuro exam was normal,they sent a psychiatrist in to speak to me. I denied being suicidal and being on drugs, so I passed the exam.

The head neuro of this hospital told my husband in his 50 years experience he has never heard of such a story,and can find nothing physically wrong with me.

My husband denies I have neuropathy up to this day.

Now I'm sure there are a lot of neuros but it seems that many say they have never heard of,don't know why,can't help,send to another doc. That frustrates me. I never feel from the neuro's I see a definate answer,path,guidelines. More that they just don't know and I hear that from others too. It seems a lot if you don't have brain or spine issues its not there specialty. Maybe I'm wrong but I wish there was more research but I guess since there are so many cause of neuropathy its hard. Its not clear cut well other then the pain.

My story
 

In March 2003 I had bi-lateral knee replacements. I was of course on many pain medications while in the hospital. I spent two weeks there. Three days in intensive care and then they removed the epidural that was controlling the pain. I noticed my feet were icy cold. I told one of the nurses that I couldn't get them warm. I had them wrapped in a sheet and blanket. The rest of me felt normal. The icy feet thing continued for awhile, even until I returned home. Once home and moving again, doing normal things, the cold feet stayed. I decided it was time to detox from all the meds that I had been on for pain before the surgery and also after the surgery. A lot of medication! I started it by myself, cold turkey. After a week of agony and misery, I decided I needed some help getting the rest of the way. So I checked myself into the local drug rehab clinic and let them help me detox the rest of the way. It took about three days. They said I'd done the hard stuff myself. During all of this my feet stayed icy.

About a week later, my feet changed one day from icy to burning and sweating. They sweated so badly that my shoes squished when I walked. And burn...oh lordy how they burned! At that point I told my PCP about it. He said well lets run some tests. After the tests he told me I had idiopathic PN. About a week of this and I said to my husband, "the only thing that is idiopathic is that idiot doctor." I contacted a neuro. I went thru 4 neuro's. I developed dry eyes during this period. Finally a small town country doctor in a town 60 miles away put it all together. Dry eyes, dry mouth, neuropathy ...voila!!!...Sjogren's Syndrome. Then he retired and I was stuck with the locals who didn't understand that Sjogren's affects the nervous system sometimes. They said it was only dry mouth and dry eyes. A nuisance disease! I pushed it all the way and went to Mayo Clinic in Rochester Minn this past Dec.

They diagnosed is as small fiber sensory neuropathy caused by Sjogren's Syndrome. They understood. Now my neurologist here follows guidelines set up by Mayo for me. That's my story and I'm sticking to it.

Billye

When PN first arrives...
 

.....it's amazing , the strange ideas many medical professionals harbor concerning neuropathic pain. When I was first diagnosed , I asked the practicing nurse as to why PN is so much more painful at night. Her answer "why at night you have nothing else to occupy your mind!" So I guess the solution to daytime pain ..get a hobby!..Tom:rolleyes:

February 18th, 2004, I had just started Lexapro three days before after breaking down in my dr's office. He made me promise to stick with it this time, I had been under extreme stress for a couple of years due to my grandson's cancer and other family tragedies. I didn't do well with antidepressants, made me feel really weird but I had promised. At that time I complained about a constant pain in my left ankle and he mentioned it might be something (can't remember)but basically blew me off.
On Sunday my ankle began to ache more and more throughout the day, I was exhausted by bedtime, the minute I laid down it was agony. I got up and paced, that was too painful, so I laid on the couch, tried ice,heat, elevating, you name it. By 2 a.m. I was crying and rocking, I took advil, and doubled my ativan dose and finally slept for about two hours. I was a wreck by the time my husband got up and readied for work and I began to go through the motions of getting ready for work. I just couldn't do it, my heart began racing and thumping so I got an empty ache in my chest, my feet were on fire, crying I called my husband to come home. I couldn't stand upright, my heart is racing and I tell my hubby I think I am having heart attack, wait, no maybe not, I'll be fine just go to work. Then I said no take me to the ER, I was shaking, sweating and the got me on the gurney and Whoolaa my heart settled down and I started crying about the agony in my left ankle, felt like a knife going right through it. The ER doc said if you had a rash I'd say shingles, hmmm are you diabetic? NO...so they gave me neurotin and ativan and in twenty minutes I was me again, I went home and slept for hours. Then it gradually came back again, more neurotin, more relief, not knowing where to go I made appt with local ortho, boy was that a smart move, he has neuropathy but did xrays and made me an appt for an emg. The rest is history, I was sent to Neuro and to Spine and Pain Clinic. Unlike a lot of others here I got to the right Drs straight away, I feel lucky in that respect. I had never heard of neuropathy. I found my way here and began to learn that I had a condition that would never go away and probably progress. Like last Sunday when my feet stopped on me and I slammed my face into the front door!
I still take Lexapro, afraid to stop, thank god I stayed on it because it was two months later that my 25 year old daughter became gravely ill and died two months later, I couldn't have survived that horrible time without some help. I also think that stress has brought on my PN, my normal life changed forever six years ago and has been like walking on a tight wire ever since!

Jannaw...
 

.....that is a tough story to tell . I cant imagine the heartbreak of losing one of my daughters. They are so very special to me, I am a very fortunate dad. Best wishes to you.

Interesting question. I basically had two revelations. The first was after a bark scorpion sting on the second toe of my left foot. I was numb from the waist down for 24 hours. Then the numbness subsided but I recognized that the sting area and the adjacent area were still numb -- a year later. Then, I started having a lot of tingling, zaps, and other neurological issues and had it all checked out. Discovered that the strange feeling in the back of my legs (especially in the shower) were known as "socks" and that the sensation I was experiencing when I started to walk was all part of the neuropathy. Click! It fell together.

Good question - thanks for asking.

That's an interesting story, too, Billye. None of us have been boring. I wonder why many of us had such sudden onsets? Even yours, Rina, is pretty sudden. And we have a lot of similiar experiences that are not mentioned in any textbooks. It's frustrating. It sure looks like there needs to be a large study done on "idiopathic" PN. Or even the onset symptoms of known types like sjogrens. I wonder if the Neuropathy Association has ever thought of this.