[aeb105]

What's going on? Just jumped in to say Hi to everybody. Problems related to Small Fiber Neuropathy started 3 years ago after using a spinal exerciser machine. While using this machine I felt some kind of tear in my upper back neck area and felt pain around my heart. Soon after that I was lifting something and it felt like the nerves around my stomach burst. After that the symtoms started.

Muscle twitching, breathing problems, burning in limbs, constant bug crawling itching centered around chest back, arms and face. Painful needle like pressures over feet, hands, arms and sometimes face. Heavy solid pressure pressing into limbs. Reflux that started to become uncontrollable. Dizziness and breathing issues that would completely incapacitate me to the vegetable point. Thundering headaches that would absolutely put me out of commision

I would try and exercise and would lose sensation in one foot or both. Sometimes I would be walking and all of a sudden I would stop feeling my legs and would start to stumble and sit down. It was like the nerves were coming unbundled and misfiring. After exercise would start to twitch uncontrollably sometimes in legs.

The worst were the electric shocks. I would get them after repeated pressing on things with my fingers for a long time. Like say typing on the computer or playing a video game or even guitar. Sometimes after physical activity or after being in the car for a long time. Even looking down reading a book. Like huge zaps or nerve electricity that would jolt me to the core.

Did all the requisite testing locally and they found 2 small hernias in the abdominal area. I had those repaired. Then full Spinal MRI and such at the Clevelend Clinic. They found some degeneration in the cervical disks and a kyphosis in the thoracic spine. Next they did a nerve fiber sample and I was diagnosed with SFN.

They told me they couldn't really help me other than give me some Lyrica or Neurontin. They didn't know much about Small Fiber Neuropathy. I had tried Neurontin from my local Neuro and it worsend my Reflux and gave me other issues. This is when I started to research, cross-research and experiment with herbs and combinations of supplements.

Instead of Neurontin, I started taking Bacopa and Gotu Kola. Both stimulate Gaba(quelled the pain and sensations) and Acetylcholine(good for rebuilding nerves) and don't give you the slew of side effects that Neurontin did. I noticed immediate better sleep and it really put my mind at ease as far as realizing how much stuff sucks now. I added Holy Basil for headaches and such. In addition, I found Topical Magnesium(good for nerves, ATP energy and pain)highly effective.

I tried ALA and ALCAR and NAC. The ALA would put me in vegetable mode. I mean after taknig Alpha Lipoic Acid I noticed I would have breathing problems and not be able to think at all. NAC would give me breathing problems and such.

Then started taking Antioxidants like Pomegranate, GliSODin, Selenium and Milk Thistle, Blueberry and Grape Seed Extact. Found definite releif and was able to ease off the Bacopa and just take Gotu Kola and Magnesium Oil as well as my Antioxidant cocktail.

After a while I learned to change things, activities and such to better deal with and not exacerbate the symptoms. I know that sleeping on my stomach or sides, looking down to read, walking for long time or doing anything continuosly with arms, hands rapidly does it.

It drills me that doctors have that condescending attitude when you tell them your problems. and yet can't help you whatsoever. In fact 2 of my doctors doubted this was even real and thought it was psychosomatic. Well, I guess it wasn't real to them until I went to the Cleveland Clinic and was able to bring them back proof. I considered turning the lights out so many times over the last 3 years because of this stuff and egotistical doctors that "couldn't" help. All they offer is an attitude and a bandaid solution from Big Pharma that will give you other problems in the long run and new problems in the short run.

This has been a painful learning process and I would like to help others in any way I can as well as learn as much as I can. I think there is alot to learn from you guys about this stuff and would like to actively contribute as much as I can. After all, most of you know better than the doctors about what is going on and I have some theories as well.

[ewizabeth]

Welcome to NeuroTalk Aeb! You've been through a lot and it sounds like you taught yourself well through trial and error. You'll find lots of helpful information here and make some new friends as well. It's a great community. I look forward to "seeing you around" in the future.

[tamiloo]

Just wanted to stop by and say !!! Hope you enjoy all that Neuro Talk has to offer. Great bunch of people just hangin out looking to lift and be lifted...support.

Take care and hope see you around!

[glenntaj]

Seems to me, from your descriptions, that you've probably had mutliple things going on beyond small-fiber neuropathy--"co-morbid", as it were. The sensory and autonomic symtpoms could be explained by pathology of the small-fibers that subsume pain/temperature sensations and many autonomic functions, but I bet you've also had some large-fiber involvement, as small-fiber problems would not affect musculature. And it's entirely possible that you also have involvement from the spinal situation (especially if you have any nerve/cord compression in the thoracic spine, which doctors are not as familiar with as they are with lumbar/cervical issues).

(What kind of sample was taken--a skin biopsy to measure small-fiber intraepidermal density/condition, or direct nerve biopsy of a larger, myelinated nerve?)

You should come look at both our Peripheral Neuropathy and Spinal forums:

http://neurotalk.psychcentral.com/forum20.html

http://neurotalk.psychcentral.com/fo...sprune=-1&f=22

[(Broken Wings)]

Welcome

We do understand and would love to hear more from you.

Very interesting. Neurontin was good for my symptoms but bad for me.

Here are some threads I've started. WARNING... long posts. You may find tips to try that may help in some way.

http://neurotalk.psychcentral.com/se...g_searchinfo=1

See ya around