How did it progress over the longterm for you?
 

I'd like to hear from people who have had this for 5 years or longer, especially those whose initial symptoms were tingling/burning/twitching and other sensory issues.
Did it take over the whole body? Did it stay the same or did it progress to motor symptoms?

I am 2 years into this and there is a clear progression so far. At first tingling/burning in feet/calves/rarely hands and now the burning is all over my legs and hands with the twitching having stayed the same.
I am 28 and thinking about where I'll be in 10 years makes me uncomfortable to say the least.

Well, I don't know--
 

--how representative I am, given the acute onset body-wide burning I experienced (the theory is still that this resulted from an autoimmune molecular mimicry process, though we hve no real "smoking gun" type of proof), but I did go through a very intense period of symptoms that came on very fast, "plateaued" around three-six months, and then VERY slowly began to recede. Not completely, mind you--I have symptoms from time to time (flares), and my overall background symptoms are still around, and are especially prone to compressive effects (if I lean on an elbow wrong I can get funny stuff going on for days), but my overall symptoms are much reduced, to the point that I am no longer on any meds.

This is five and three quarters years in--my neuropathy started on April 12, 2003, around 11AM. It was that quick.

It's very possible my situation was monophasic, leaving residual damage, but not progressive beyond the initial global attack. This doesn't seem to be the typical profile for most neuropathy suffferers, though. More report that the condition plateaus or slowly progresses over the years, though this is hardly inevitable--if an underlying cause is found and treated, the process can be arrested or even reversed, which several people here have reported. (Nerves take an incredibly long time to heal, though--and you can really get some bizzaro dysesthetic sensations during the process, as the nerve growth cones fight through tissue trying to reconnect to their efferents, which the brain can interpret as pain, tingling, electricity, presence of things not actually there . . .)

I do think almost all of us can benefit from a supplement regimen to promote nerve healing--B-vitamins, D, lipoic acid, essential fatty acids, acetyl-l-carnitine, conenzyme Q10, and the like. Not everything works for everyone, and there's a lot of trial and error (and some expense) involved. But setting up an environment that promotes metabolic efficiency and eliminates/minimizes neuroexcitatory/neurotoxic influences (these include MSG and other glutamates, sugar, alcohol, gluten/caesin for some people) is not a bad idea anyway, from standpoints other than the neurologic.

I was diagnosed with carpal tunnel over 10 yrs ago, that was possibly the beginning of my neuropathy, although I had been complaining for years of aches and pains.

For 4 yrs, I have been taking B12, starting at 1000mcg, now 3000mcg, and soon I am going to increast it again. My neuropathy has not progressed in the last 3 yrs, it didn't go away, but not progressing is great too. My hands are better now. I wasn't able to sew, my fingers would go numb in just a couple of minutes, now I can sew with minimal tingling. There is hope.

My neuropathy has been progressive - started as intense burning pain, which fortunately over time has turned to numbness, but I also developed motor neuropathy which effects mostly my legs. I also have damage to the nerves coming out of my spine in my lower back which effects my posture markedly - I can no longer stand up straight else I fall over backwards imediately. I also have to walk with very bent knees to get my centre of gravity low enough. I walk/ ride with a variety of aids (crutches, wheelchair, mobility scooter, depends on the circumstances).

I know my case isn't typical, but it has been pretty severe. Oh, I also have a couple of foot drops which I wear splints for.

cheers

Raglet

Raglet, just curious, how long from onset to reach numbness and then weakness?

Onset speed
 

My PN started overnight but not with a vengence - woke up with completely numb right hand and right food that never left.... but aside from worsening balance continued like that for couple of months... having an HMO they refused to send me to neuro - by the time I got to see one by raising hecking with them - it was six months, I'd already had to leave work due to severe loss of balance, and nerve testing immediately showed damage arms and legs to sensory nerves predominately.... they called it "post viral" at the time....

then I got a very severe intestinal infection for six months - we dont know how much the infection contributued and how much one of the anti-b's contribututed (flagyl) but tests when finally kicked the infection showed body wide almost completely sensory nerve loss, autonomic damage (heart and guts), and lesser degree motor - both degernerative and demylinating with severe damage to nerve axons (they are gone).... so from original onset to wheelchair about a year and a half... that was 9 years ago.... many many tests later, high doeses of ivig, nothing has helped, I've gotten worse - cant eat solid food due to auotnomic symtoms, and they say nothing can be done - they think its a combo of genetic PN kicked up by the infection/anti-b's at the start.... I do have some days better then others - depends on if I've had to go to doc appointment or push my body to any degree - then can expect next 3 days to be very tough..... I think we all have different degrees of onset - depending on underlying cause - and how fortunate we were to be able to get adequate medical care from the start....:confused:

Mine began 5 years ago with a sharp pain in the bottom of my right foot. It progressed, within a couple weeks to the other foot. After numerous doctor visits and podiatrists, it was determined to be Morton's Neuroma. So, a nerve in each foot was removed. Unfortunately, I believe this was the wrong diagnosis. I continue to have burning on the bottom of both feet and it has stayed there. No progression. It definitely gets worse with sweets and alcohol. I am learning, as most on the site will attest, that I haven't always been the best patient. It is hard to adapt to the changes of the body. But, I am getting better with diet and learning that the human body is a very complex piece of machinery. Aside from the numbness of my surgery, I have been relatively pain free for almost a week. I don't assume anything anymore. I just enjoy the good days and hope for more. The same is wished for you!

April ‘04

Mine came on fast. From nothing to OMG in three days. It started with some cramping (in my toes) while doing my leg lifts (exercises).

Left foot wham. Three days later right foot wham. Numbness - burning - stiffness.

I am NOT a “Dr. baby” and never was even when I had money/insurance. I don’t run to the doctor all the time. No insurance (wife got that in the divorce) - not much money (exporting of manufacturing got that).

I did get all the basic testing and it came up (insert medical term here) “unknown cause”.

My PN mostly stayed the same with some increasing symptoms esp in my left lower leg. The testing showed “worse” in my left leg.

Two weeks ago I got another horrible shock. All five toes on my right foot went > hammertoe or claw toe or STUPID and that is now my big big worry.

I am not sure if this toe stuff (horrible as it is) is PN or or or .......... I may of caused it myself (see my coming thread) by something I did for a month.

Both of my feet (toes) have hurt and seemed stiff since it all first started.

My PN started 3 years ago with cold (numbness) in both feet. I didn't really notice it coming on.

For the first couple of years the symptoms were just this and were remitting and relapsing (coming and going) a few weeks or months at time. Relapses were usually triggered by the onset of a cold/virus.

However for the last six months symptoms have been constant. They (burning and tingling) progressed up the front of my legs via the ankles (worse in left leg) to the knee area.

These symptoms have abated and I'm left with the foot numbness and pains in the front/outside of left thigh (femoral nerve ?).

I wonder if my numbness is part PN and part a circulatory problem as its always worst in cold weather ?

It strikes me what a variety of symptoms we suffer from ???

My first appointment with the rheumatologist was Jan. 2002. I went because of hand numbness and pain. She dx'd me with a progressive form of scleroderma, which I believed until 2005 when I saw a sclero specialist.
I was just dx'd with SFN January 2009 so I don't know if my info is of any help at all.
I always assumed the burning of my feet was caused by the cold and because I wore 2 pairs of socks in the winter - they were just overheating. The cold sensation to my shins, I assumed was cold as well. Cold Ohio temps in winter, and cold A/C in summers. That stared around 2000. My progression seems to come and go, but each time it's a little worse. I only get the pain when I over do it, shooting and stabbing pain up my forearms and through the leg muscles. My biggest complaint is the weakness and fatigue. My hubby's a musician and I've go dancing everytime he plays, which is proabably why I never noticed a problem with my lower legs, other than the occasional stumble, which I always ignored, but have since learned is because my ankles and tops of my feet are rather numb. I think that dancing has also helped to keep them strong. Climbing stairs is getting harder, my legs, up to my hips get a sensation of weakness and burning, and sometimes I have to sit or crouch down right away. My feet are starting to go numb when I sit for too long, and I don't have the fast walk I use to. Hubby use to yell at me to slow down, now I yell for him to.
About 1 1/2 yrs ago, I was taking vitamins and supplements - B 100, Vits A & E, calcium & magnesium as well as potassium. The only noticable difference for me was I wasn't always so tired. But, I would still fall asleep at my desk from time to time and the weakness and pain didn't go away. My BP is lower now than it was in 2002, but I don't know if thats related. I use to be the "perfect" 110/70, now my average is 96/65 and it sometimes drops 80's over 40's.
I'm still learning about all this and trying to find what will work for me. They think mine is caused by an autoimmune process, but they don't know what. Best I can tell is mine has been a slow to moderate progession, but again, I'm still learning. Like I said, a lot of what I can now attribute to SFN, I thought for years was caused by something else.

Hope this helps!

Mine seemed to come on slow for the first couple years, mostly pain and tingling in my feet and hands, nothing I couldn't live with. In the last 2 years, the pain and burning increased intensly in the feet and hands with the worst coming in the last 4-5 months. My bum started to burn, then the burning and pain started moving up the legs and arms. Now my entire body surface feels like a bad sunburn, even scratching an itch is very painful. I wake up 2-3 times a night with heavy sweating, though I am feeling cold. My legs below the knees and my feet constantly feel like they are always cold (sometimes like they are in a block of ice) even though they couldn't be that cold (I've tried it with warmed socks-same cold feeling). My legs have intense pain and burning during the night and mornings which often makes me unable to walk or stand up, even to the point of almost making me cry! I have dizziness, balance issues, even to the point of needless babbling about things (i.e. "honey, did I lock up the boat before we left"...we do not own a boat). I can't stand for any length of time and can only sit for about 30 seconds before my bum is burning intensly. My only best position is lying on my side in bed! Typing can't be done long before it feels like tapping on sewing needles! I have constipation, difficulty in starting urination, etc. I currently take 3600mgs a day of Nuerontin and 30mgs a day of Methadone. I take a 3 day "drug holiday" per my neuro doc every month to aid in the tolerance issues. By day 2 I cannot get out of bed except to go to the bathroom. The Methadone is not working very well anymore at the current dosage. I am making an appointment tomorrow to see my neuro doc (hopefully sometime soon), but he doesn't seem that interested in me, in fact he said he just sees me because he must every 6 months due to my Methadone Rx. He says he believes my SFN is degenerative in origin and gives no other explanation nor has any interest in doing anymore tests. I guess its not a "cool enough" disease for him!

Most of this bad crap has come on very strong in the last few months (say the last 4 months). Very, very fast! I would just about give anything for 30 minutes without pain! And I am only 47 years old. My son cannot ride piggyback on me, nor high-five my hands at age 6! I am very frustrated and angry, there is no time during the day (not even 5 minutes) without some level of pain (and its mostly a 6-9 on a 10 scale). I am tired most of the time and cannot work anymore (starting the lovely social security disability claim now) even though I sit at a desk all day. It puts me in a lousy mood alot. I do not show this emotion around my son, but my wife notices the change in me and I fight daily to be more upbeat about my condition.

I don't know what to tell ya, just try to hang in there. It can come on slow and even stop the progression sometimes, but cases like mine seem to just be a steady progression of worst to worser and short bursts. Hopefully your case doesn't follow my path.

Jay

I am so sorry for your illness. You reallly put in perspective how this disease can affect people so differently. I hope you can find some type of relief from your pain. I know that onremitting pain is horrible, and you have a 5 star example of how bad it can be. Where the docs able to come up with a cause of your PN? Or, is it idiopathic in nature like so many people afflicted with this disease? The problem with this crummy disease, is it is invisible to those around us. We aren't jaundiced, or in a wheelchair....well at least those that are still fighting sensory PN in their hands or feet. Again, I hope you can find a doctor who can work with you and show some concern. Have your tried Lyrica? It has been a much better drug for me than neurontin...just a thought.

Jay, I am so sorry for everything that you are going through. Yes, It is true we all are different when it comes to this disease, but one thing I have come across quite a lot on the net is the treatment of patients by many neurologists. Once they find out that it's neuropathy, especially when the cause is unknown, many patients feel tossed aside. I know I did. My primary doctor actually said he was disappointed in my neurologist behavior, and said, "I'm so sorry" before setting me up with another referral. My neurologist wasn't a mean man, Just uninterested and disconnected once he did his tests. I realize there are exceptions, and there are some very good doctors out there, but since I have been stricken with this and have talked to other neuropathy sufferers on the net, I find it often very common to be treated in such a matter. :(

my PN
 

is over 30 yrs old.

Initially it was because of a hard to diagnose thyroid condition.
Once that got the proper attention, my feet and hands improved somewhat (about 80%). At one point I could not sign my name. I had a power of attorney for my husband to use in my behalf. My very first supplement was P5P over a decade ago. This one was pretty dramatic in giving me improvement, esp in my hands. I don't wear the braces anymore unless I overdo gardening. Some days it is hard knowing what is too much. So my husband helps with the heavy digging now. I managed to continue to work, and be on my feet up to 13 hrs a day. (no sitting in my job).

Then I became OLDER...and then it was insulin resistance that started in. This was burning, and sometimes stabbing twinges.

I have no real progression today, and many low pain or no pain days. I do not use drugs except for Tylenol or Aleve OTC.
I have found several supplements that work for me. It was slow going, some trial and error. I have some food triggers, that took me years to figure out. Since I eliminated potatoes at night, and MSG and all sugar/fructose my burning has been much better with fewer flares. I did gluten free for about 3 yrs, but did not see nearly the improvement that fructose free gave me.

Everyone is different, genetically.

Thanks everyone! :-) Since the FDA has not approved Lyrica for SFN treatment, my insurance company will not cover it (and its VERY expensive without insurance). My doctor will not Dx a malady which the FDA does approve Lyrica for. I guess he's too above-board to do that, as a professional myself (accountant), I understand his position, though it doesn't help me out much.

I did see him again today and he asked if I had tried Oxycontin, apparently he doesn't remember that my insurance company won't cover Oxy and prefers Methadone instead. He wouldn't increase my Methadone and he can't up the Neurontin since I'm at the max allowed humans a day. He didagree to write a disability letter, though said he would only be telling them what I have told him since SFN cannot be confirmed by testing. I'm afraid it may not be much help with my claim, but I have no other choice, unless one of you have an idea.

Anyway, thanks for the nice comments. I know I ramble on too long.

Jay

Well, small-fiber neuropathy--
 

--CAN be confirmed by certain tests, such as quantitative sensory testing, sudomotor axon reflex testing, and, the most recent gold standard, skin biopsy that shows a reduction in intraepidermal nerve fiber density.

Take a look at this:

http://www.medscape.com/viewarticle/563262_6

None of these are likely to show a cause of the neuropathy, but they can certainly document why you might have symptoms.