Hello! I'm new here, 53 and I also suffer from small fiber, autonomic and large fiber neuropathy. I fell ill when I was 24 and it took until yesterday to be diagnosed. Doctors didn't believe my symptoms so no one did the testing I needed. Almost everyone said I was a psych case, but testing finally proved otherwise. I've been practically living on the sofa for the past 25 years and letting life slip through my fingers. Alive, but not living. My neuro prescribed Neurontin, Mestinon, Cymbalta and Alpha-Lipoic acid yesterday. She said she didn't know the cause and probably wouldn't ever. I find this hard to swallow, as I had a strep infection immediately before I became ill.

I thought I saw some of you are receiving plasmapharesis or IVIG. How do docs know what causes the PN and what to treat you with?

Thanks much.

Hi and Welcome,

You seem to have gone a long time without many answers. Must have been a rough road. However, I don't know what kind of symptoms you're having so don't know how best to comment. There is a wide array of symptoms for SFN (burning, numbness, pin/needles, pain, etc) and Autonomic neuropathy has even more (BP, gastorparesis, difficulty urinating or sweating, heart rate, vasospasms, balance, etc). I'll assume you have some motor problems with the large fiber neuropathy.

I would guess and suggest you be tested for autoimmune diseases (maybe you already have). Infections can trigger an autoimmune response like you've experienced. I don't see any cardiac meds for low BP (one of the most common autonomic dysfunctions), so I'll assume it's not a problem.

Plasmapharesis and IVIG are big guns and used only in certain circumstances where conditions are defined and unresponsive to other treatments tried first. There are many causes of PN!!! You need to find a doctor willing to help you investigate everything from diabetes, metals, toxins, autoimmune diseases, and of course, nerve compression in the spine somewhere.

If you supply us with a little more information about what you've already been tested for and the results, we might be able to point you in a helpful direction.

--hints at an autoimmune molecular mimicry reaction in which an activated immune system targeted whatever nerve components were shaped similarly to the offending pathogen, but that is not necessarily the casue of your neuropathy, as there are so many.

But, agreeing with en bloc, it does seem you would need a work-up directed at cause finding, if that's possible at this stage, and not just testing documenting the extent of the neuropathy. We feel that the following sites provide at least a decent guide (and the first involves spreadsheets that are a good way to track test results over time and look for patterns):

www.lizajane.org

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

http://www.aafp.org/afp/980215ap/poncelet.html

I'm replying collectively in little bits and pieces. It's too hard for me to use my laptop for very long. But thank you to everyone who replied!

It's been such a long and terrorizing road I honestly don't know how I survived it. Almost 3 decades sans diagnosis, but I'm still here. I almost wish I hadn't made it because I'm in such horrific pain so much of the time I can't bear much more.

It's been a long time, but I'll try to remember the chronology. It started with strep symptoms, of course, followed by a stressful divorce that I initiated. It was supposed to be a happy time for me. But shortly after the strep I had a sudden onset of SEVERE neck pain that radiated partly down my right arm and I had trouble holding my head up or carrying my then 2-year-old son. I still have alternating periods of neck pain interspersed with difficulty holding my head up and this is definitely still my very worst and painful symptom. Next I had the constant sensation of a rubber band or string tied around my left toe. Then it was hot/cold and burning, pins and needles, then shooting needle like pain in the ends of my toes. It moved to the bottom of my feet and it felt like they were hot and swollen, like I was walking on needles or thumb tacks. Then the horrific thigh muscles and knees aching that seemed to last years. Or maybe it did? Fatigue was incredible and I'm still exhausted all of the time. Oh, and I have had very low back pain for a long time, but no one can find the cause.

Everything has progressed and now I can't even sit up very long. I rarely leave the main level of my home (we have 3 levels), and I only drive on my best days. It was a waxing/waning type of thing in the beginning, but at a certain point (around age 42) it all became very chronic. I can stick needles up and down my arms and legs, into my lower back and buttocks and I'll bleed but feel absolutely nothing.

I have serious breathing problems along the way that no one can figure out. I was told at one time that I needed to be on mechanical ventilation, but the results of that test was discarded as a technical error. I was even told I needed a lung transplant/lung reduction, but that was also retracted later because my PFTs normalized again (at the same large prestigious medical facility whose name I shall not mention).

My neurologist told me not to disregard anxiety last Friday, but I KNOW it isn't anxiety. My oxygen can drop down into the 80s and anxiety doesn't do that to a person. I don't hyperventilate. If anything I hypoventilate, but definitely not purposely. I also have breathlessness often. Sometimes I can get up the stairs without any breathlessness at all. The next time I can barely take a breath in once I get to my bed — I'm fighting to suck in air. I have to use CPAP to keep breathing at night, but it isn't always enough and I have to stay awake and try to breathe "manually" sometimes. It seriously feels like my diaphragm stops working or my body forgets to breathe. I have set off more cardiac alarms than I can count because I'm not breathing, but nurses always tell me their cardiac machine is old or it doesn't work right or they just shut it off. Oh, and I also have frequent episodes of stridor and episodes of laryngitis where I lose my voice.

I do have Autonomic neuropathy with every symptom mentioned about it including difficulty urinating, polyuria, incontinence, sweating, not sweating, tachycardia, now bradycardia, arrhythmia, inverted T-waves, low BP, vomiting undigested food, balance issues, gastroparesis, plain old constipation and even watery diarrhea. There are more, but I'm too pooped to finish. I also have mitral valve prolapse, but not everyone can find it. It's hit and miss. I tested positive on the QSART test, but more recently my neurologist said the combination of my SFN and ANS symptoms cinched it. I was taking Florinef, but was recently taken off. I wish they hadn't done that because I know it helped me. Oh, and I do waste sodium through my urine and my serum sodium is often too low. I have also had many episodes of dehydration and hypovolemia for no apparent reason.

I have an "old" nerve root injury somewhere in my C-spine, but I can't lay my hands on that report just now. Does anyone know how they can tell if it's an old or new injury or what else it could be?

I do have motor problems, big time. I'm pretty much immobile a lot of the time because my body just can't move. If I do something simple like bend over for 5 minutes to pull a few weeds I'm down for the next two days with pain and immobility. I find it next to impossible to raise a hair dryer to dry my hair, the muscle (nerve) strength to bathe, reach up in the cupboard, trip over my feet all the time. I also list to the right when I'm trying to walk a straight line. Have no sense of direction in the dark. Have even gotten out of bed in the a.m. and fallen flat on my face because my nerves were not quite ready when I was, they were nil. Just bloodied my knees and face is all. I find it very difficult to sit here and type because I can't lift my arms much and my fingers don't press down hard enough on the keyboard and I'm currently in moderate pain.

Whatever type of neuropathy I have seems to affect my eyes with filmy vision, some blurring and rarely double vision. I also wonder about my brain with some anger issues that crop up very rapidly now and then and disappear just as quickly. I have no explanation for it and I'm left very confused at the way I acted, however brief. I am not an angry person, I'm very laid back, mellow, peace loving and rational. I also get migraines, but not nearly as often since perimenopause.

I've been tested for autoimmune diseases (probably too many times) and my antibodies are fine. The only recurring thing is low complement (C3), high sed rate (occasionally), high CRP (frequent), high white count (frequent), anemia (on and off). I was being treated for seronegative Sjogren's for dry eyes and mouth, but I do not believe I have it. I think the dry eyes and mouth are part of the autonomic neuropathy, period.

I don't have diabetes, but I am now glucose intolerant (per my endo). My A1C is at 61 I think, but he says I'm not diabetic yet. But I didn't have glucose intolerance or high blood sugar 28 years ago when this all started, so that's not the problem.

I looked at all of the links provided, understood them (thank you by the way), and I don't seem to fit any of them except maybe diabetic neuropathy (but that's out because I wasn't even close to being diabetic until one year ago).

My thoughts:

Sarcoidosis? possibly.

Hereditary predisposition to pressure palsies is another possibility, and I say that because my sister has same symptoms, but has not had an EMG.

Paraneoplastic syndrome is out because the malignancy surely would have reared its ugly head by now. However, I am a breast cancer survivor 15 years cancer free. Yay for me.

Arsenic, lead, and the usual suspects were tested at that prestigious facility whose name I shall not mention. They searched mainly for autoimmune disease there and didn't find one. But they didn't exactly find the neuropathy either. Hmmmm. Well, sort of. They found something suggestive of PN with electrodiagnostic testing and QSART but cut me loose without doing anything. Had a bully of a neurologist there.

Don't have HIV or AIDS, was tested more than once. No one has looked for porphyria, so I do question that.

Results: Nerve conduction shows reduced right median motor nerve conduction velocity across the wrist, absent right and slow left sural sensory nerve conduction velocities, reduced peroneal CMAPS and reduced left peroneal distal motor conduction velocity.

Conclusion: 1). right median neuropathy at the wrist and 2) asymmetric peripheral polyneuropathy. Features appear for a mixed neuropathy of both axonal and demyelinative type.

It can't be CIDP or a variant since it's asymmetric, correct?

It all sounds pretty benign compared to the way I feel. But thanks for letting me peck and poke away. I appreciate everyone's input.

WoW
and a doctor thought it may be in "your head"? technically he is right of course. You know meds can mimic some symptoms , lethargy, vision problems, balance etc. Im not suggesting that its the case but I was very concerned about my own double vision until I read about it here. what meds are you on?

"I also wonder about my brain with some anger issues that crop up very rapidly now and then and disappear just as quickly. I have no explanation for it and I'm left very confused at the way I acted, however brief. I am not an angry person, I'm very laid back, mellow, peace loving and rational"

This is okay I get the same sometimes but you know deep down its very difficult to be loving ,laid back and mellow when your body is trying its best to imitate a train wreck in slow motion. Heres a secret, when i was in meltdown on a very bad day My G/F was ranting and then all the words starting coming out in slow motion like in the movies. I had a vision of dropping her out of the window only problem is I'm on the 11th floor
that freaked me out because in Jail i wouldn't get any meds

An overload of frustration and guilt is pretty powerful stuff that does not do any of us any good because it STRESS. Im trying to work on mine . You told us about your divorce and anger issues so thats a good start, just being able to talk about it will help.

hope you find some releif here, its good to just chat or vent with people who really truly understand

Im also on Cpap (8 years). Did you do a sleep study? is the cpap apnea related or PN? I have googled them together and there is a definite connection. If your very over weight it to would place large pressure on your diaphragm and throat as well

They only thought it was in my head for 29 years before someone finally did a full EMG. Oooooooo, the pain! I knew I was sick, but somehow doctors can almost make you believe you've gone gonzo.

The meds I just started last Friday are Neurontin, Mestinon, Alpha-Lipoic Acid and Cymbalta. Meds I've been on for a while are B-6, Multivitamin, Sodium Chloride, Zantac, Vicodin and one Ambien per night. But vision problems, lethargy and balance problems began long before I was taking anything at all.

) Lol about the 11th floor window and no meds! I feel like there is an underlying problem in regard my mini meltdowns because nothing and no one provokes them. I won't worry about that. The bigger problems are obvious medical malpractice, trying to get me mobile, and making the pain better. Does anyone take narcotic pain meds? I have severe residual muscle pain after my bouts of muscle weakness.

I do have an overload of frustration, but guilt is my worst emotion to deal with. Hubby does everything and I have to lie down and watch him. My brain wants to go, but my body won't let me. My divorce was a good thing and it happened 29 years ago. No stress over that one. I've since remarried a wonderful man (understatement) and we've been together for 18 years, almost 19. Talking it out with people who understand certainly does help. Thank you!

I did have a sleep study. The CPAP . . . it isn't apnea, but they don't know what it is, so I'm going to say PN. I'm not overweight at all. I feel like (know in my heart) this is a problem with my diaphragm or phrenic nerve. It happens if I've been too active, too hot or eaten too much. The usual suspects that affect my PN and Autonomic Neuropathy. I wish my neurologist wouldn't discount it because it is serious. I've been admitted to critical care a couple of times for it. One would think the neurologists would have done an EMG while I was hospitalized, but they didn't.

Thanks so much for "talking to me" zorro. Much appreciated!

Sorry to hear that it has taken so long for you to get a diagnosis of PN and AN - it's unthinkable really!

However from my understanding (and it’s awhile since I’ve done research on this) these (PN & AN) are generally symptoms of other conditions. One of the articles I found very explanatory at the time I was researching this topic can be found at this link http://www.aafp.org/afp/980215ap/poncelet.html This paper is getting a bit old now – 1998 - but it still has a lot of fundamental information. It is possible that some medical conditions have been added to this algorithmic list since then but looking at other papers may reveal newer listings.

.....Glenntag posted the same link before me! Oh well it's an oldie but a goodie!! hehe!

it is so good to see you here

Thanks Amit. I drop in here from time to time. My issues are continuing pretty much unabated, frustratingly. Am on stacks of meds & supplements now (or it seems like it) but can't really complain too much.

Hope you are doing ok.