I have had peripheral neuropathy symptoms for approximately 16 years. I gave up on neurology over a decade ago because all my test results always came back normal (EMGs, MRIs, spinal myelogram, etc.). Back then, they didn't do skin biopsies for small fiber neuropathy and I STILL haven't had one but I hope to soon.

What I did have recently was my first EMG in over ten years. My psychotherapist recommended a neurologist who has helped her patients who are medical question marks. So I saw him in March and he did an EMG. I did not see him yet to discuss my results, but I received a copy of the results today. I couldn't believe it. FINALLY, my EMG results are abnormal. I should be SAD about this, but I am happy that I am finally getting validation after 16 long years.

Here's what my summary results say:

The nerve conduction study of the above nerves showed prolonged DML right peroneal nerve, decreased amplitude right peroneal at the fibular head, decreased conduction velocity right tibial. The monopolar needle EMG revealed increased in spontaneous activity and positive wave vastus lateralis.

Impression:

This is an abnormal study. There is electromyographic evidence of sensory and motor polyneuropathy and possible myopathy. Etiology is yet to be determined. Clinical correlation is required.

I have many questions about these results. Docs suspect I have autonomic nervous system disorder and/or an undifferentiated autoimmune condition (negative for Sjogren's as of now). If the cause of the neuropathy is autonomic nervous system dysfunction or autoimmune disease does that mean that it will be difficult or unlikely to treat successfully? Does myopathy mean muscle disease? If I have both sensory and motor neuropathy, doesn't that mean I should be having motor nerve problems? I am not having trouble walking (thankfully). I do have fine motor difficulties in my hands but I do not have neuropathy in my hands (and hope I never do). Do these results mean that my problems are not small fiber neuropathy or is it possible that I could have small fiber neuropathy too? Should I go ahead and request a skin biopsy? Will any of this show up on MRI (T3 or T4 MRI that shows soft tissue problems)? I have neuropathy all the way up to my butt and was thinking of having an MRI of the pelvis with emphasis on soft tissue because I have some scar tissue in my butt and was wondering if I might have nerve entrapment in the glut meteus or pyriformis muscle (PT suggested this).

Also, here's some bloodwork results that I thought are weird. My B12 levels are ELEVATED even though I went off ALL supplements for three weeks before getting bloodwork done. My B12 levels came back high at 1005 pg/mL. My folate level was >19.9. My B6 level was 13.8 ug/L. My vitamin D, 25-Hydroxy levels were LOW at 23.9. My Vitamin B1 (Thiamine) level was 160.1.

Any thoughts on any of my above questions and/or why in the world my B12 level would be elevated and what it means is GREATLY appreciated.

Thank you!!

As I commented in your post on the New Member thread; I'm glad you have some answers and a direction in your diagnostic journey.

You have lots of questions, so I'll just touch on the autonomic for now.

First the autonomic system IS part of the peripheral nervous system. So it's likely that if there is any autonomic dysfunction it's coming from whatever is causing the PN, not the other way around. That said, I didn't see anything on your original list of symptoms (in the new member thread) that are typical of autonomic dysfunction, other than GI motility and that test was negative twice.

The usual presentation of autonomic dysfunction includes, GI motility, postural BP changes, fluctuating heart rate/rhythm (tachy/brady), temperature regulation problems, balance, difficulty initiating urination, sexual dysfunction. Even vasospasms and livedo reticuaris (also caused by spasm) are also due to autonomic dysfunction.

It sounds like you have more sicca & PN symptoms, than autonomic.

About treatment of autonomic issues. Some systems affected can be treated...like motility meds/diet changes for gastroparesis. If your GI problems are a motility issue and just mild enough as not to test positive, then simple diet changes may be helpful. I have gastroparesis, and take medicine, but also get benefits from diet changes like: eating small soft low-fat meals (never in the late evening), avoid raw fruits/veggies/nuts, stay upright after eating, and most important--grinding up food (called mechanical soft diet).

Not all autonomic dysfunction can be treated, but some, particularly GI & cardiac aspects have several options.

I would get the MRI's you mentioned and discuss the skin biopsy with your doctor based upon the EMG findings.

Can you remember how much B12 you took a day? And for how long?

My b12 has been 1500-2000 regardless if I took a supplement. When I stopped I think it actually went up. My neurologist did not seemed worried and just said to stop the b12 supp. Who knows though cause it is odd.
I would get an mri.
I understand when I have went through my many dc testing I want the test to show something concrete. Obviously not bad but some direction at least. How can one be treated properly otherwise.
Feel better

Thanks for your response. I have had autonomic system dysfunction symptoms come and go over the past couple of decades. I went through periods in which I would experience racing heartbeat (several minutes/hours at a time) for no apparent reason. I went through a whole year (several years back) of low grade fevers and episodes of weird upper body flushing. I'd be sitting in a meeting and turn bright red for no apparent reason. Then I'd go in the bathroom and there would be this microscopic red spots on my face where the flushing had been. When I touched them, they would smear blood on my face. I guess the flushing was so severe it was causing capillaries to burst. I also have balance issues. I have lightheadedness episodes for months at a time that come and go. I will get this sensation you get when you've been on a boat and get off and still feel like you are on the boat. Kind of like this feeling that things are moving under me. Usually, this will last for several hours, then I'll get a headache. If I sleep it will be better. It is also affected, I think by certain meds. I also have general balance issues (I walk into corners all the time...cut corners by accident and walk into them). I have Raynaud's which has gotten worse in my hands and feet. I used to be hot all the time (when I was on hormones), now I am cold all the time. I cannot maintain normal weight. The first Rheumatologist who suspected Sjogren's said that I had mild livido reticularis. I didn't even realize it until he pointed it out, but I do have very mild web-like patterns on my legs. Some docs don't even acknowledge it because it is so faint. I have only mild postural BP changes. I have fainted only once and that was from a what I later found out was a severe bladder infection. But I get faint a lot of times if I stand up too fast or change position too fast. I have had all types of urinary issues secondary to interstitial cystitis (urgency, frequency, difficulty initiating flow, urine retention). I also fluctuate between constipation and loose stools. I've had sexual dysfunction (inability to orgasm), but I always attributed it to taking SSRIs because I know they can cause that. Now, with the vulvar skin pain issues, I can forget about sex altogether. I single and not seeing anyone so it doesn't matter, I guess. The gastro motility issues will come on for months at a time, then I'll take Reglan for a while (used to be Zelnorm til they blackboxed it) and they'll go away. The Sicca symptoms, neuropathy, and vulvar skin issues are constant/chronic. The other stuff seems to come and go.

I understand about the coming/going of autonomic symptoms. Mine are pretty much constant now, but at the start (15 years ago) it was like this. You should inquire about other autonomic testing for the fast heart and BP. Event recorders can be handy to keep for a month or more (usually the case) and just placed on the chest when you feel the racing so it can document and determine the action. A tilt table is also quite effective for the lightheaded when changing position.

I know you already had the gastric empty test, but if you go spurts (a few months) with problems, then this is the time to retest.

PLEASE look into other treatments for GI motility issues. Reglan is KNOWN to cause movements disorders...and can be permanent. I had tried it years ago (before it was splashed all over the TV about lawsuits), and immediately had uncontrolled twitching and like restless leg syndrome. There are other treatments like modified diet and if severe enough, Domperidone.

The livedo is associated with autonomic as well. It is spasms of the medium sized vessels in the skin...which may have something to do with that flushing and broken capillaries. Lots of doctors don't pay attention to livedo unless very noticeable. My doctor always asks if his colleagues can come look at mine during exam (very pronounced on both arm, legs, and front/back of torso). Sometimes it's like I'm side show...but good they can learn and see, so I don't complain.

When do you see the neuro to discuss your results? Please keep us posted.

Hi Mrs. D - I stopped all supplements 3 weeks before getting my B12 levels tested. Before that I was not using the B12 supplement very regularly. I had it in a liquid (mouth spray) form and would forget to use it most of the time. All my other supplements are in pill form. I was also taking a B6 and Biotin supplement.

I have no idea why my B12 levels were high? Could it be from eating certain foods? Could it be that my body is not absorbing it properly so it is showing high levels in my blood? Could meds I am taking affect it? I have been on a long term dose of Lamisil for chronic yeast.

Not sure. All I know is that I was not using the B12 supplement spray even half the time because I would forget to do the spray.

Thank you.

1000 is not that high. But Lamisil oral may be affecting your liver, and hampering storage there.

My B12 with no supplements when tested a few years ago was 849. It is now at 1999 (the testing maximum). Probably higher than that. I am testing out the new methylB12 at Puritan's Pride, before recommending it. Also starting metformin again, which depletes this.

High B12 when no supplements have been used at all...is not common. It might reflect some blood diseases, or kidney failure.
Some dysbiosis in the intestines by bacteria may increase B12 because bacteria synthesize this vitamin.

Here is a monograph for Lamisil oral: hepatotoxic!
http://www.rxlist.com/lamisil-drug.htm
Click on the precautions and side effects section to read in full.

I would seriously discuss whether you need this drug "long term". It is not frequently used anymore because of its toxic potential.

Hi Mrs. D - Thanks for your response. I know that the Lamisil can be toxic to the liver. They are testing my liver every six weeks. Thankfully, I only have about a week left on the Lamisil. They put me on it because I've had so many problems with yeast. I didn't want to be on it for more than 3 mos. but my doctor insisted on 3 more months.

Maybe I'll have them check my B12 again after I'm off the Lamisil for a while.

I had something strange happen about a year and a half ago. The alternative med doc I saw gave me a B12 injection of supposedly three times the normal B12 injection dose. For an entire 24 hour period, I had no neuropathy symptoms!!!! I had pink urine. The doc said that was normal with a high dose of B12. I had had B12 injections in the past that had not helped but this one being three times the normal dose did help. Any thoughts?

Also, should I continue to use B12 supplementation even if my levels are over 1000?? If I'm not absorbing it, then maybe supplementation doesn't help? I'm confused.

Thank you.

I don't know the answer to your question. Sorry...

But in Dr. Snow's paper, he addresses neuro problems in patients in his study with appearing "normal" blood levels of B12 who improved with treatment anyway:

http://neurotalk.psychcentral.com/post698522-70.html

There is a "pump" in the spinal cord that moves B12 into the CSF, from the blood serum. It only works well the the levels are high. This is why low serum levels, lead to neuro symptoms since B12 cannot get into the spinal cord and brain.
MS and Fibro have had studies showing low B12 in the spinal fluid.

When B12 is injected according to my reference here AHFSDrug Information reference...it only lasts in the serum for about 72 hrs. It is then lost thru the kidneys or soaked up by other tissues.

I seems that there could be a problem in some people with how B12 is managed. But proof of that is not easily forthcoming.