What type of Neuropathy do you have?
 

I am courious as to what type of nueropathy you all have. Mine is due to a Vitamine B6 deficiency.

Welcome to the forum Julie. It's good you found us, lots of good info here.

I am not positive about the why's of my neuropathy. I suspect it is a B 12 deficiency caused by my celiac disease not being diagnosed for so many years. My neurologist seems to be doubting my neuropathy, he feels it is a cervical problem instead. I have an MRI and an EMG tomorrow. I honestly think he just doesn't like the fact that my family doctor diagnosed my neuropathy. Sorry, I am very sick of doctors, especially the ones who look at you as work and not a person with feelings.

hi
 

Hi julie
Mine is caused through undiagnosed diabetes so they call it peripheral neuropathy.

mine is
 

connected to poor thyroid functioning. Started in my early 30's then.

I have
 

idiopathic small fiber primarily sensory neuropathy but there could be a contribution form prediabetes. I just saw my neuro yesterday and his diagnosis hasn't changed - I'm fortunate in that I have mild motor nerve involvement but I do have very painful sensory symptoms.
Welcome to the forum - you've come to the right place for information and for support.
Alkymst

Sjogren's Syndrome
 

Hi Julie,
Mine is due to Sjogren's Syndrome which is an autoimmune disease. Diagnosed in my late 50's.

Billye

Mine right now is pn but also another probably undiagnosed issue though I have had every test in the book and still not sure. I suffered from severe anorexia for 12 years so may have been related to that as well.

I have severe axonal sensory motor pn with demyelination in my feet and lower legs and moderate in my hands. No cause found on tests, ideopathic, however i know it is from toxins.

HeyJoe, what kind of toxins do you think? We lived on a military base for 16 years and I can't help but wonder the same thing for myself.

yep...
 

...small fiber polyneuropathy , had it for 3 months ( newbie ). Diagnosed diabetic March 1, started oral meds March 10, neuropathy March 15. Go figure.....

My neuro says axonal sensory polyneuropathy of a length dependent nature...Cause pre-diabetic (altho my GTT says high normal, but my neuro is a pre-diabetic nut) alcohol abuse (altho it started to develop before I was drinking- I was self-medicating with vodka prior to my eventual Dx of PNand exacerbated it) - but actual reason for original onset is really unknown.

That is a hard question to answer because at last count there were over 400 involved as well as combinations of those created during combustion. Mercury,pbc, pvc, dioxin, lead, the list goes on, as well as numerous respiratory infections caused by microscopic glass silica and puverized conrete, which of course could also set off an autoimmune reaction . Im sorry i cant be of more help, im looking for the complete list myself. If i get it ill send it to you. I had a massive exposure then a continuing exposure for 4 months.

oops!
 

hmm.....nide44's post just reminded me of another possible cause of my neuropathy, drinking way too much. I wasn't self medicating..just having a good time. I developed a personal relationship with Jack Daniels. Wish I had that to do over. Live and learn the hard way. Stupid,,Stupid,,,Stupid. Which reminds me, a recent article I read stated that weed helps with neuro pain. I think Monday I am going doctor shopping.:rolleyes:

My nerve damage is central and due to B12 deficiency, not peripheral. But damage to the central nervous system also affects the peripheral nervous system and can cause various types of PN symptoms and signs.

rose

Hi there
 

And welcome, I was diagnose as pre diabetic at age 19,did well with that
by diet,until 8 years ago,self medicated on food became Diabectic 2.
Poor Thyroid funtioning since i was 30, 14 yrs. ago diagnosed with Sjoren's
Syndrone (Autoimmune diease) my neuro believes truma from head-on
collision. My Uncle was a Commmander in the Navy,his Neuro believed
both his PN and Alzheimers was caused by Mercury in lead based paint.
Also there is a Study about lead base paint in living Quarters on Bases.
Not to mention, let's say Agent Orange and and 400 other types of
toxins. It severly effects my feet, calves, hands to elbows and across
my back to left shoulder in big way. Darn stuff hurts doesn't it,along
with burning,tinging,ect. Please keep posting and tell us some more
about you. :) Sue

My full-body, acute onset burning small-fiber neuropathy--
 

--has never been definitively etiologized, but a post-infectious autoimmune molecular mimicry process is strongly suspected. The theory is my body absorbeda pathogen, probably fought it off, but the pathogen had a molecular structure that was similar enought oc ompnents of my small-fiber nerves that the now-activated immune system could not shut off until it basically destroyed my small-fiber nerves. (This seemed to be the evidence from my first skin biopsy, which showed I'd bascially been reduced to 2% of normal intaepidermal nerve fiber density.)

I do seem to be getting some recovery, along with reduction in symptoms--my last skin biopsy showed I was up to 11% of normal intraepidermal density. (I'm due for another one in November.)

This type of presentation seems to be rare--an autoimmune attack on larger, myelinated nerves, such as in Guillain Barre syndrome, is more common--but in both cases the prognosis is long, slow, partial recovery. I do seem to have some permanent damage, in that I now am much more prone to compressive nerve effects than "normals".

Well whatever Glen just explained...
 

is what my SF neuro specialist has said in my case as well. Before my acute bodywide onset, I had a pretty bad upper respitory infection for like a month. But... not known to me at the time I also had a long standing gut infection with H.Pylori bacteria which was diagnosed by biopsy.

I have managed to find quite a bit on the internet linking helicobacter infection to Guillian Barre like syndromes. There could even possibly be a slight nutritional component to mine as well, due to the helicobacter infection. I was iron anemic on my blood tests, and the first time I supplemented with B12, I passed out in bed and slept for like 3 hours from 10 to 1pm which was extremely unusual. I also remember on that day that I also for some reason couldn't move my arms after I took the B12.

Just to add one more thing... I have had PN, both motor & sensory in both my legs due to DDD & trapped nerve roots from herniated discs long before I had my acute bodywide onset of SF PN. I just never knew it had a name.

To put it quite simply, I am a diabetic for 20 years. I was quite stupid in that I ate myself silly, didn't work out, and as a result I am diabetic.

Could have stopped the eating years and years ago, but food is what I used to self-medicate. Never drank, did smoke a joint once in a while at the age of 24, but once I realized that I got hungry after that, that's all I needed!!! Stopped smoking joints.

Lost weight, gained weight, still self medicated with food. Couldn't stand my mother, loved my father, I ate and I ate.

Then at age 40, got diagnosed with diabetes. Did I listen to what the doctors said to me? Did I lose weight?? Hell no!!!

And my son's asperger behavior, well forget about that. Self medicated with food. But when I reached my 50's, well something must have happened because I took a good hard look at my health and decided "no more stupid eating". Became healthier, looked much better. But..... too late for me. Developed neuropathy anyway. So my sugar was controlled for over a year when I developed neuropathy.

Guess all those years of being stupid, well, they really did me in, didn't they!!!

Thank god, I'm not stupid anymore.

So that's my story!!

Melody

Mine was caused by a combination of Prediabetes & low levels of B12.

:icon_lol:

I have a bilateral, asymmetrical, familial small-fiber neuropathy, with some large fiber and autonomic involvement. The origin appears to be hereditary, form an autosomal dominant gene. I suspect that toxic exposure to compound varnish may have been the trigger for the condition.

And moving on to . . . Jack Daniels, weed, whatever. I would encourage anyone who has any traits or habits pertaining to addiction to be careful with marijuana. It can be powerfully psychologically addictive. On the other hand . . . there appears to be no question that it can be an effective pain reliever.

I tried it as my condition deteriorated, but I found it to be not helpful at all. In fact, it tended to intensify my pain sensations. I have an MD friend who is a BIG advocate of using it for pain relief. He is a chief of an oncology dept. and has been doing some research on the side (he is also a huge fan of integrative medicine as preached by Dr. Andrew Weil). I think he just completed a study and has published his results -- may have been a pilot study. If anyone is interested, I can find it and post a link.

rafi

DanP: I think your NP is the closest related to my husbands NP, His is because of an extended period of untreated diabetes. We have Endocronologist(Diabetes Dr) who my
husband thinks is a quack (I sorta agree) she said that 300 sugar numbers were OK numbers, needless to say we ran screaming from her office never to be seen again. We have an Intern Medicine Dr who has been keeping an eye on our liver, kidneys and such, we have a Neurologist who is helping us with this nerve damage sitch, and a kidney specialist who does the obvious, and now a cardiologist to see if the heart is causing any of the pain,. The neurologist was the one who referred us to the heart Dr and he said " I really don't know why you are here the damage you have is normal for a man of your age (46). Oh yea, he has an aunt who has Charcot Marie Tooth (CMT) disease, so we went to have that checked out too!!!! Guess what?? NEGATIVE. The only common denominator that I see is they all seem to think that he might need a pain management Dr. to help us with this deal. Your opinion would really be appreciated and anyone else that would like to chime in. Thanks a Bunch..... This has been a grueling experience

DrMom49

Hi, I have been told I have small fibre peripheral neuropathy, no know cause as yet put have found out I am low in B12 & D. I am taking supplements now but have not had any improvment yet. We have a very slow hospital system over here and I am waiting to be seen by a neuroligist but this could take a while. :hug:

PN
 

I have peripheral neuropathy from nerves being pinched in more than one area of my lumbar spine and cervical spine. I has effected my hands,arms ,feet and legs and lately my bladder.The trigmenal nerve acted up in my face awhile back. That was very painful.

I have sensory motor axonal neuropathy caused by my lupus (autoimmune disease).

cheers
raglet

Wish I i knew the cause.....
 

I have mixed axonal and demyelinating peripheral polyneuropathy. I have been tested for diabetes, B12, folate, thyroid and a whole slew of other things, all negative results. Therefore, it is diagnosed as idiopathic. I have been complaining of symptoms since 1996 but was told over and over that nothing was wrong. Just this year I saw a new neuro and after a battery of expensive tests I was diagnosed from an abnormal EMG-NCS. Was initially started on Neurontin 300mg, which was later increased to 600mg. Now we have added Cymbalta 30mg. Haven't noticed much of a difference, just sleepy. My symptoms (burning, tingling, weakness, hypersensitivity) come and go. Sometimes things will be good for several months and then for no apparent reason, BAM.....the symptoms are back. Does anyone else have the same experience where their symptoms come and go?

Small and large fiber peripheral neuropathy. Doctors have been unable to identify the cause. I have had test after test and all blood work has come back normal. Had an MRI done and it showed atrophy to my cerebellum. Preliminary diagnosis is Spinocelebellar Ataxia. My balance has gone down hill over the past 5 years. I have little feeling in my legs from the knee down and my feet. My arms and hands have started to numb. I will say that I have started Cymbalta and it has helped with the neupathic pain. I have also begun to use a TENS unit and regularly attend acupuncture. I swim in order to stay active. All of this has helped. I have had serveral DNA tests completed to hopefully get a final diagnosis. I meet with my neurologist at the end of May to discuss the results.

Dewey

kprn have you had blood tests for autoimmune diseases or cidp (chronic inflammatory demyelinating polyneuropathy)? In both cases remitting and relapsing periods can occur.

I have polyneuropathie my right foot is more affected then my left foot and also my hands starting to get numb at the finger tops again the right hand is more affected then the left.Symptomes differ day to day,and are usually worse in the morning then later on the day.Today both my hands and left foot where very sensative.My left enkel is contstant warm
Cause of my PN still needs to be determined it could be a slow tyroid or a b12 defficiency.
Treatment i am getting now:Pens or percutanious nerve stimulation i also use L-carnitine and alpha lipo acid,fishoil and q10.
Starting this week with a trail treatment 1000 microgram hydroxocobalamine for a mouth.

At the moment i am looking for is a more agressive treatment maybe something like infuse treatment like tioctacid.

I walk,swim,cycle as much as i can to keep the NP under control

sfn
 

I have idiopatic small fiber neuropathy, confirm by skin biopsy.

I think my pn is the result of taking Lipitor; however, since the numbness didn't start right away after beginning the drug, I never made the connection until my daughter-in-law read an article in The Peoples Pharmacy column about statins causing pn in some people. I did see several neurologists and the last one administered a battery of tests, all of which were inconclusive. This was in 1999. My main concern at that point was whether it would cause me to fall. She assured me it would not, and I was not having pain then, just numb feet. I should also state that I have autoimmune problems, hypothyroidism, Raynauds, migraine headaches, osteoporosis, and irritable bowel, so maybe I was a prime candidate for it. I am not diabetic.
I am taking the suggested supplements, including benfotiamine, and prefer to handle the pain now by watching my diet, not eating sugar, avoiding the night shades, and getting plenty of rest.

Joan

No, I don't believe that I was tested for CIDP. If I ask to be tested for it, do I ask for CIDP or are there other lab tests involved? Right off the top of my head, I cannot remember if I was tested for any other autoimmune disorders, I don't have my paperwork with me. I think I am going to request the referral to the Cleveland clinic. Last night was horrible. My hands burned terribly despite the nightime regimen of Cymbalta and Neurontin. Seems like I can tolerate the pain much better during the day but I need my sleep in order to do so. I decided to split my dose of Neurontin and take one this morning and one this evening to see if I could get a more "steady state" of the drug level over the 24 hrs instead of taking it all at bedtime. Bad move.....9:30am and I am sleepy. Won't get much done at work today. Thanks for the info, ;)Echoes Long Ago.

Hi Athena labs has a panel for autoimmune markers. A spinal tap can also be used to test for autoimmune markers. Going to Cleveland Clinic or the jack miller center in chicago would not be a bad idea.

http://millercenter.uchicago.edu/lea...ory/cidp.shtml

http://neuromuscular.wustl.edu/antibody/pnimdem.html

http://www.cidpusa.org/diagnosis.html

I have small fiber neuropathy and possibly autonomic neuropathy. I am still in the frustratingly long process of finding the WHY. I am seeing a new neurologist that specializes in autonomic dysfunction.

I am in kind of bad shape right now. :( I have decided to go the mega-dosage Neurontin route to help the severe pain in my left arm associated with this mess. Narcotic meds do not help all that much with this type of pain. I have been offered IVIG but am looking at a huge outlay of cash as my insurance only covers 80%. A hardship as I am not working because of this illness. Also, I am not sure if it would work. If I have a severe attack that lands me in the hospital (this happened last year), I will try the IVIG then.

Hope everyone is doing okay,

Mere

I dont believe in idiopathic ,, there is a reason for it,, and I just think when they rule out teh biggies that cause it,, they lay that idiopathic label on us,, The problem is,, we get it,, they cant find cause,, it gets worse,, still cant find cause,, then what?, do we just sit there and wonder at what point we throw in the towel due to the pain associated with SFN,,, I have it,, and I refuse to give in to it,, I want answers as to why I have it,,, I will tell you this,, if just one of your doctors or mine would come down with this,, you can bet they would leave no stone unturned looking for treatment,, I have gone IVIG,, Rituxin last week,, and this wek I feel like I should be pushing up dirt,,no energy,, sun burning my body, and were supposed to jsut accept this way of life,, ?

I agree with you 'feel the burn' - ideopathic is a cop out and we shouldnt put up with it - I have only had blood tests and a glucose tolerance test and then my neurologist went on maternity leave 15months ago - I have to wait until she returns to work as Neurologists are thin on the ground in Scotland - thats the good old British NHS system for you - healthcare is free but the waiting is brutal!
I am a scientist and it is second nature to research the unknown but you can only do so much yourself - we will all have PHDs in the subject before we are finished - lol
I would like to thank everyone here - whenever I am really bad like now I come on here, have a read and somehow things dont seem so bad:grouphug: .

Feel the burn & malawigirl,
Go to www.lizajane.org and download the chart for the tests for PN.
This site was designed by PN sufferers and experts for PN specifically.
This is the most comprehensive list of tests, for the causes of PN - that I know of.

I have vitamin deficient neuro - Vit B6- B12- Vitamin D

Be careful with B6.
Too much has been positively linked as one of the causes of PN.
A normal person should not take more than 50-100 mg/day, as a supplement.(this is totaled with all supplements, such as- B complex, multi-vitamins, & B6 added together.)