Please don't feel awkward or shy here!
I have the same thing and do have autonomic involvement. The next step will be more testing to see if they can find the cause. For me and for others here, the cause was not found and we are stuck with pain management and are on our own journeys of dietary modifications and self care. Hopefully your cause will be found. Keep us posted and ask any questions and post as much as you want. In the beginning I had so many questions.
You can do searches and read through old posts to learn more. I started a thread a while back for what we have. I'll try to dig it up and revive it so you can read it.

Thanks everyone one for responding, I really appreciate the kind words of support and willingness to help a complete stranger, like myself!!!

So I have a bunch of questions and some more information about myself... I'd love to hear more from you guys

I'm working on a timeline/backstory to post when I have some free time. This started exactly two years ago (December 2013) when I was 27 years old.

So I searched around the site and it seems that "non-length dependent" (NLD) is not very common... Is that right? Is NLD small fiber neuropathy the same as "ganglionopathy" or "neuronopathy"? Is it also not super common to have zero nerve fibers found during skin biopsy? I made the neurologist show me the results and I honestly have zero... What could possibly wipe out all of them?!! Am I someone who could benefit from IVIG? Has anyone ever heard of Nitrofurantoin toxicity? That is the only thing I was able to find during all of my Googling, in terms of toxins... I had been taking that on/off for 2 years when this started.

I have had:
- 3 EMG/nerve conduction
- MRI of lower spine
- MRI of thoracic spine
- MRI of left ankle
- MRI of right ankle
*All MRI were without contrast
- Several EKG
- 24 HR Holter monitor
- 2 ECG
- Xray of lungs
- Xray of ankles
- Skin biopsy of ankle
- Skin biopsy of thigh
- Several "standard" blood labs
- 2 Rheumatologist full labs
- Eye exam

Medications:
- Lyrica
- Nortriptyline
- Percocet
- Compound cream
- Restasis
- Alpha Lipoic Acid
- Fish Oil
*I have tried Cymbalta, Tramadol, and was also taking Metoprolol

As for diet, I have been vegetarian/vegan for most of my life. I was temporarily eating meat when symptoms first started. I am currently a very strict vegetarian/almost vegan, minus a few things including fish oil and honey. I have kind of strange food cravings/addictions like kale, asparagus, cauliflower, sweet potatoes, oranges, and lentils. I was very athletic my whole life, lived outdoors, especially love(d) to run, and ride my bike to work and everywhere. Unfortunately, since this terrible pain started I've lost doing all those things that made me so happy. I'm crossing my fingers "Santa" brings me a stationary recumbent bike this year and I can get back to moving without passing out!

Hi, there and welcome to our PN forum.

I have some questions:
Have you had B12 tested? With that long history of Vegan eating, you may be low in this. You should be above 400pg/ml. If you were tested, do you know your numerical result? Lab ranges still report low levels as normal, and therefore a doctor will not respond to them properly.

Have you had Vit D tested?

I wonder about your cravings.... this usually means something is missing in your diet and the body is trying to make up for it.

Do you eat gluten?

Most of the reports of nitrofurantoin toxicity say it resolves in a year or two... but everyone is different. 2 yrs on it is a long time also, so you may take longer to heal.

In ganglionopathies, eventually the end point nerves atrophy, because the dorsal root ganglion is responsible for sending messages in return for sensory content. It is like a feedback loop. If the ganglions are damaged, eventually the peripheral endings where the testing was done, don't get the returning signals, and stop firing. This has been discovered in some primate research recently.

Here is our thread about the dorsal roots:

http://neurotalk.psychcentral.com/sh...ht=dorsal+root

More on dorsal root testing:
http://neurotalk.psychcentral.com/sh...ht=dorsal+root

Vegan eating can lead to low levels of methionine, zinc, tryptophan as well. So you might want to test for zinc/copper ratio. Some of our members here have been found to be low in copper for some reason. Many vegans also become low in Omega-3 fatty acids. Flax oil and fish oil are examples of these.

My neuro told me the same, "It won't kill you, but it is uncomfortable." The thing is that I had high amounts of jo-1 (myositis antibody) before my diagnosis of sfn. For some reason, the jo-1 seems to have gone away. Myositis killed my uncle. So, I kind of was relieved to hear those words.

I am also athletic. It has taken about 9 months, but I am back to my running self, symptoms and all. The exhaustion gets better, but it is a very slow process. I started back run/walking. I cried many, many times mourning for all that I used to do.

The good news for me and maybe for you. Exercise really does help my symptoms, especially the autonomic symptoms. A year ago, I couldn't bend over to pick things up because I got so dizzy I felt I would pass out. I was worried my base boards would never be cleaned again! Now, I am able to do most things I was doing before.

spin bike is my Craigslist find. 75$ and it has handles to work shoulders. Good hunting Ken in Texas.