Looking for a forum for Small Fiber Neuropathy
 

The Drs. have ruled out Peripheral Neuropathy and now say I have small fiber neuropathy. I was just wondering if there was a board here or some other place.

Thank you!
Julie

This is the Board for it--
 

--as small-fiber neuropathy is just one broad category of peripheral neuropathy; specifically, dysfunction of the small, unmyelinated nerves that control the sensations of pain and temperature and mediate many autonomic functions.

We discuss it a lot here (though many people have "mixed" types).

Also look at:

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

http://neuromuscular.wustl.edu/sensory-small.html

Oh Julie....Bless your heart.

I'm telling you...just trying to find out I have SFN has been a challenge and I've had to do all the research and even had to ask for the skin biopsy....lol....All prior tests were negative (ie nerve conductivity and that needle thingy that HURT a lot). It was driving me crazy....2 + 2 should equal 4 but with the doctors 2 + 2 equals whatever.

My dr used Bako for my biopsy and their results scale is 0 to 15. 15 being the best. I was totally shocked and unprepared for my results of 0....but I cried because I was so relieved to have a diagnosis after 5 months.

I was pre-diabetic with only burning toes at the end of the day when I wound up with serous uterine cancer (Serous is the actual name and rare). Then it was 6 rounds of chemo and 1 month after the treatments ended (Mar 2013) I could barely walk. This pain is unbearable at times and mine seems to be progressing to include more of my foot. At the beginning it was from the middle of the foot up to my toes....symptoms are: burning, electrical like currents, numbness, a crawling feeling under the skin on my feet, ankle cramps and so on. This is 24/7 for me an ebbs and flows alllll day long :)

Please let me know what is going on with you. I'm brand new to this site but have been reading the threads since Dec 2012

It's a nice, cool morning in Georgia :)

Hi Georgia, it's a stormy night here in the Pacific Northwest.

My toes are numb, well I can feel them a little. This started over 2 years ago. Then the backs of my heels started burning badly. The Neuro sent me to a Podiatrist for my heels. Said that wasn't Neuropathy! I went and got all kinds of diagnoses..from bursitis, Plantar Fasciitis, Achilles Tendon (both feet mind you) Etc. I did stretching exercises and icing 3x a day for 6 weeks.. Nothing. Heels still felt the same. Spent hundreds of bucks on orthotics since I was also told I have pronation.
I decided to go for yet another opinion. I have now gone to a Sports medicine Dr. He took tons of Xrays on my feet and ankles. He thinks it's my Cutaneous nerves. I go back in a week or so for reevaluation. We'll see if he can help me. I'm so frustrated and in so much pain.
In the hot summer days if a breeze comes in the house my calves freeze. I sit with 3 blankets on them and it's almost 80 degrees in here. No a/c here.

I have had the nerve conductive tests plus a EMG. Both were negative which I expected. My Neuro just said I had Small Fiber Neuropathy then. She didn't say a skin biopsy was necessary.
I am so sensitive to drugs I've been unable to take anything for it. I've had RLS since childhood and since 1999 I've been on 1200mg Gabapentin. They've tried upping it but each time I get confused and light headed.
I'm at a loss to what I can do. :(

Your cold sensitivity and restless leg syndrome fom childhood seem to point to a possible hereditary neuropathy. Research Charcot Marie Tooth and see what you think.
This usually shows up on an EMG/NCS because it is a large/small fiber neuropathy but they my have missed something.

Susanne, I'll go look that up right now but I'm not cold even though my calves feel like ice. If I tough them they are warm. Strange..

I requested skin biopsy because I just had......
 

I just HAD to knowthat is what it was and it has been a relief even though it was bad. I had to ask for the test myself as they usually just 'say' you have it using clinical findings. The test gives them a 'range' of how much damage has been done. If my results had been better he said there is a prescription vitamin they can give that has good results in helping regenerate the nerves.

My feet use to do like your legs......freezing but when I touched them they were warm...weird. And I also have some numbness and not some numbness around all my toes.

Went to see pain dr today since I was told by my foot dr that there was nothing to be done since my epidermis is devoid of fibers, and he said.....there are usually 3 steps for pain relief if there is no hope of regeneration of nerves.... 1st is meds (I'm on gabapentin/neurotin 1,800 mg a day and he sees no reason to try any others since this has not helped at all), 2nd is sympathic nerve block and 3rd a neurostimulator that is implanted. In my case that would be implanted in my buttocks area...lol

He also states that I have to have the sympathic nerve block first before insurance will agree to a trial run with the stimulator.

Scared as heck and have never, ever wanted anyone to be anywhere near my back with a needle but if it will help me get some type of daily quality of life back I'm going to have to try it. Oh to be able to drive again, clean and re-do my house, run around with the grandkids and just simply go to WalMart !

You have to be your own medical advocate when trying to figure this stuff out and read and read and read these threads and anything else you can. I have learned so much from these people on here and the dr today was pretty impressed with my knowledge.

I'm thinking about u and please let's stay in touch on here.

It's nice and cool here in Georgia but I am flat burning up !
Got the A/C on 72 and the fan blowing on me..crazy right ?

Sfn & buzzing
 

[QUOTE=Jewels43;1018585]Hi Georgia, it's a stormy night here in the Pacific Northwest.

My toes are numb, well I can feel them a little. This started over 2 years ago. Then the backs of my heels started burning badly. The Neuro sent me to a Podiatrist for my heels. Said that wasn't Neuropathy! I went and got all kinds of diagnoses..from bursitis, Plantar Fasciitis, Achilles Tendon (both feet mind you) Etc. I did stretching exercises and icing 3x a day for 6 weeks.. Nothing. Heels still felt the same. Spent hundreds of bucks on orthotics since I was also told I have pronation.
I decided to go for yet another opinion. I have now gone to a Sports medicine Dr. He took tons of Xrays on my feet and ankles. He thinks it's my Cutaneous nerves. I go back in a week or so for reevaluation. We'll see if he can help me. I'm so frustrated and in so much pain.
In the hot summer days if a breeze comes in the house my calves freeze. I sit with 3 blankets on them and it's almost 80 degrees in here. No a/c here.

I have had the nerve conductive tests plus a EMG. Both were negative which I expected. My Neuro just said I had Small Fiber Neuropathy then. She didn't say a skin biopsy was necessary.
I am so sensitive to drugs I've been unable to take anything for it. I've had RLS since childhood and since 1999 I've been on 1200mg Gabapentin. They've tried upping it but each time I get confused and light headed.
I'm at a loss to what I can do. :(

Hi Jewels, Georgia

Its a cool clear night here in the Southeast. Sorry to hear you were diagnosed with Small fiber Neuropathy. I was diagnosed with SFN back in August of 2012, by skin biopsy. I first went to a Neurologist with burning under my feet and tingling in my calves 3/2011. It has been a very painful trip. I had a "comprehensive" blood work-up according to 6 diff Neurologist, 2 Rheumatologist. I even tried two Neuromuscular Neuros in NYC. No one can find a cause. So mine is "Idiopathic":confused:. So hard for me to accept that these Doctors (Specialist) can not find a cause for this horrible pain. I will probably die trying. Mine started out of the blue, with burning under my feet and pins & needles in my calves. It has progressed to my hands, fingers, arms, torso (Frnt & back) and face (Lips). I have it widespread. My symptoms are pins & needles, tingling, horrible buzzing, burning, stinging burning, electric -like pain, stabs , jabs, bee-sting,bites, I get sensitivity in my hands that comes and goes. The list goes on..I have developed tinnitus, a horrible loud ringing type feeling in my ears (&head), I feel it most when the buzzing is strong and moving from my legs to my arms. (I know it sounds crazy).:( I feel like there is electricity flowing around inside me. :( I never had tinnitus before. I have all these symptoms but I do not and never had any numbness or any autonomic involvement, except when I start feeling the burning and tingling, sometimes I get a warm feeling rushing up to my face and feel like I going to sweat , even when its cool in the house. I am on 300 mgs of Lyrica, for pain which dosent do much, my Neuro dosent want to increase the dosage because of SE and 10 mgs of Amitriptyline , the Ami just helps me to sleep a little. And Lidoderm (Lidocaine) patches for my feet as needed.. It scares me when I think about where this Neuropathy is going how bad its going to get as it progresses. I am at my wits end, I am crying as I write this. I feel alone, no one can understand how I feel unless they feel it too. they can not see my pain. I have become home bound and depressed. Do either of you have any of these symptoms, esc the buzzing, its such a horrible feeling. Then of course there's the stinging & burning in my feet and toes and now fingers. ughhh. .What are you taking for your pain? Sorry this doesn't answer any of your questions, but I saw your posts for SFN and had to write. Thank you for reading and responding..
Marie

Georgia,
I am on 1200mg. of Gabapentin for my RLS and have tried to up it but get so much confusion and light headed I have to go back to my original dose.
I do use Vicodin (1/2 tab) but it doesn't faze my heel burning. I use it for Vulvodynia, another nerve problem. I guess I already stated my Gabapentin dose.

Marie, I have researched this till I'm blurry eyed and I believe mine is "Idiopathic" too. You seem to have it everywhere. I have tried 5% Lidocaine gel and/or patches with no relief.:mad:
I hear your pain, frustration, depression, hopelessness!
I understand!! I try and get out of the house as the opposite make me much more depressed.I just got over double pneumonia and spent 6 weeks in my recliner. I about went mad.

I don't have any buzzing.I'm beginning to get tingling and burning on my lips.
I'm really sorry you have it so bad. Stay positive, maybe one day there will discover a cure.

The prescription vitamin is Metanx.

This you can do yourself...
methylcobalamin
methylfolate
activated B6 called P5P.

If you have the MTHFR mutation, then it is critical to have
the methyl versions of B12 and folate.
You really should get that DNA test. It is a common mutation.

However, the Metanx is only one part of rebuilding damaged nerves. It requires a good source of Omega-3 fatty acids to provide the building blocks to the nerve membranes. The vitamins are only cofactors. Without Omega-3's not much improvement will be likely.

The entire body needs Omega-3s as well, and they have been traditionally not in our common diets.

Glenn has had later skin biopsies showing improvement over the years. He does the nutrients carefully, and they are probably the factor helping him.
http://neurotalk.psychcentral.com/post1005701-33.html

This is a link to a video at Medscape. Bent98 provided it last year.
It is helpful to illustrate what the dorsal horn of the spinal cord are and it also
suggests how some drugs like gabapentin may help chronic pain.
It does not offer nutrient solutions, like most medical sites avoid discussing. If you do not have a membership to Medscape you can make one easily..and it is free. There are great informational links available there for all sorts of health and drug information.
http://www.medscape.org/viewarticle/754961

There is a genetic subset of patients who cannot rebuild cell damage
at the dorsal root level. There is no test for this as yet. But there is a paper on this forum from research stating that for those people with the defect, stem cells are the only thing so far to help. Evidently most people have the correct genes and DNA in place to fix things at the dorsal roots that have been damaged.