Hiiii

I apologize in advance haha
I have never posted on a website before and I'm not exactly sure what I'm doing... No lies, it also feels terribly awkward!!

With that being said, I registered yesterday to hopefully get some suggestions, tips, opinions... Absolutely any sort of knowledge or insight is welcome because I'm so lost.

I'm 29 years old, female
Three months ago I was diagnosed with "non-length dependent small fiber neuropathy" after skin biopsy results (ankle and thigh) showed there were zero nerve fibers left in both locations. I have pain consistently in my legs but also random attacks on my face, scalp, ears, collarbone, upper back, arms, and stomach. My neurologist does not seem to be very concerned but I'm feeling the polar opposite of that. During my most recent visit, I explained my newest symptoms and was told that it is progressing to my autonomic nerves. My next appointment is not scheduled until mid March... Should I be concerned? Gut feeling, I think so!

Thanks so much for any response!!!

Hi Hibodhi,
I'm sorry that your having such nasty symptoms. Of course you should be concerned. The neurologists seem to not take small fiber neuropathy very seriously. One specialist told me - "don't worry, it might be uncomfortable - but it won't kill you".

Unfortunately, there's generally no "cure" for SFN, but there are some treatments that can help - if you can find the underlying cause. What tests have your doctors done to try and find the cause?

Even if the doctors can't find the cause, there are still things you can do to help slow the progression, and/or relieve the symptoms. The primary things you should be looking at beyond working with your doctors are: dietary improvements, dietary supplements, exercise, and stress reduction. These things have proven to be helpful to many, if not most of the people who frequent this forum. Although, how much it helps varies greatly from person to person.

If you truly have no nerve fibers left on your biopsy, and progression to your autonomic nerves, that is pretty severe. Chances are, the conservative treatments might not be enough. There are various medications that your doctors can provide to help with pain, but their effectiveness and their side effects vary from person to person. There are also medications that can help with the autonomic symptoms. (There are others here who can probably provide better information in that area.)

Best of luck. I know it is overwhelming, but spend some time to go through this forum. Take some time to read through some of the old posts, to get a feel for what others are going through and how they cope. Research your condition and what can be done to help. Work with your doctors to try and find the cause, as well as to find the right medications to relieve the symptoms. Hopefully you will start to feel at least a little better very soon.

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.

Polar opposite, most of us know that same emotion. the Dr acts as if it's nothing and you are in a panic. Sorry this has befallen you. Did he or she prescribe any meds(RX) for help with the leg pain? Is the leg pain a deep pain or a shallower zapping, stinging, burning type? There are many things that cause SFN and knowing the cause helps to know a particular thing to work on such as toxins or Chemo induced. I am diabetic with Periferal Neuropathy and although it is not SFN there are many similar treatments and symptoms. Most everyone regardless of diagnosis(DX) knows their b-12 number. 400 is the low end of acceptable and 900+ is optimal. There is no fast way to gain patience, but it will come in time. Next appt in March? See there it is already. If you lurk and read and use the search function(at top of page in toolbar) and use at least 4 charachters you can find an absolute overload of info. I would like to say that we all here are not Drs so if you read something that you want to do, it is recommended that you consult your Neurologist first. Myself , I am 2.5 yrs down the road and at one point was pushing a walker taking Hydrocodone 10-325 plus Tramadol plus sleeping pills plus Gabapentin but am happy to say that now all I take are diabetic meds and no walker. Did you catch the 2.5 yrs down the road. There is where the patience comes in.I hope you can fight the panic that I know you are in so write us back and tell us more. Good Luck, Ken in Texas. "Let us not talk falsly now, the hour is getting late"-- Bob Dilan

Nice to meet you

Coming here was the first time I had ever connected with anyone via internet but sure am glad I did. This is a great place with awesome and caring people.

I too have severe SFN, no A or C Fibers left in my feet. They only did 2 skin punches at my ankle. And yes....looking at the report was very scary ! There are a couple of other people on here that also have zero fibers.

I was pre-diabetic when I had 6 rounds of chemo (taxol-carbo). About a month after that I could barely walk. Most of the dr's say the SFN is from the diabetes but a few agree with me......I already had it to a certain degree and the chemo just sped it up quick and in a hurry. My chemo ended in March 2013.

Totally understand the neuro thing. The one I saw was pretty useless and I don't even see a neuro now. I use my PCP and a pain mgmt. doctor. In the beginning when they found out how bad this was I had 3 different dr's tell me that I needed a pain mgmt. dr......I was so worried about ending up in a 'pill mill' that I put off going until Sept/Oct of last year. That was the best decision I've made since this started.

I've been though all the basic meds they like to give you. I was able to tolerate the gabapentin but only at 1800 mgs a day. Any higher and I start hearing muffled sounds of music and people talking ! Weird to say the least. I was on hydrocodone 10-325 before seeing the pain dr. I'm now on BuTrans pain patch 20 mcg/hr that I change every 7 days and 3 oxycodone a day 10-325.

So glad you found us.

Debi from Georgia