[Joe V]

Hi everybody! My name is Joe and I have moderate/severe small fiber neuropathy. I'm 21 years old and I live in the Cleveland, Ohio area. I posted in the new members section, but I figured I would post in this sub-forum to introduce myself to people who have a similar condition. I am still seaching for answers as to why this is happening to me. I walk with a cane on bad days, and I just finished weening myself off of gabapentin due to a horrible memory loss side effect. I'm glad to have found this forum, and I hope you all will accept me into you're family!

[Kitt]

Welcome Joe V.

Someone will be along to help.

[St George 2013]

Bless your heart...you are so very young to have this. I'm from Georgia and 52....I was pre-diabetic when I had to have 6 rounds of chemo. About a month after the chemo ended I could barely walk because of the pain in my feet. That was May 2013. It has now spread to my legs, arms and hands. I was dx'd with a skin biopsy that showed my A and C fibers were gone in my feet.

I found out the hard way that the gabapentin was helping me. (all the drugs work different for everyone) Since we were not sure how much the gaba was helping he took me off it and put me straight on Lyrica which gave me the worst stomach aches I've ever had ! To prove it to my neuro I had to go off the Lyrica for 3 weeks....wound up off gaba for 6 to 9 weeks...can't remember now......I was right back to the pain that vicodin didn't even take the edge off....finally started titrating back up to 1800 mg of gaba and I'm much better. I can control the pain with vicodin every 3 hours and 1/2 a Xanax when it's really bad.

I can do short walks around the yard and get around the house ok but if I have to go anywhere that involves walking I have to use a wheelchair. I can't even grocery shop because the vibration of the scooter things they have set off the nerves in my feet.

Well I just put all that out there didn't I ? Glad you found us and there will be lots of others following me.

What meds are you currently taking ? Any supplements ?

Debi from Georgia

[Joe V]

Hi St. George! I'm very sorry to hear about you're situation. I hope that you will find a way to achieve proper pain relief, because what you're going through is terrible. I am currently taking otc b12 supplements as per my neurologist, and currently using small amounts of CBD for pain relief. It seems to work reasonably well, at least to take the edge off. It doesn't seem to help at all with my extreme fatigue or difficulty breathing/pre-syncope. Taking it one day at a time, trying not to fall off of my rocker or lose my job! As a side note, I love Georgia. I lived in Woodstock for a few years, and it was heaven compared to Ohio!

[glenntaj]

--more acute possibilities for neuropathy have to be investigated.

Firstly, have you had spinal and or brain imaging? Symptoms of peripheral neuropathy can exactly mimic those of spinal compression or central nervous system disease, so it's important to rule those out first.

Then, it's time to look into possible autoimmune, toxic, or nutritional causes. You should examine what you are exposed to in your environment, as well as whether there might be nutritional deficiencies (such as with B-vitamins, or secondary to gluten/celiac problems).

And, as I'm sure Kitt will mention, there is always the possibility of herediatry/genetic neuropathy conditions, which can be expressed in wildly varied ways and intensities even in people of the same family.

In terms of possible testing, many of us go by these lists:

www.lizajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

And the Poncelet protocols are a good guide as well:

http://www.aafp.org/afp/1998/0215/p755.html

[en bloc]

Can you tell us any more about your situation? Did this start suddenly, or over time? Did you have a virus/infection, trauma/surgery, or new medication just prior to the onset of your symptoms?

What are your symptoms and tests you have had done?

Being that you are taking B12, shall I assume your doctor tested and found your level to be low? How low?

Welcome to the board and hope we can help you...at least provide some support during the frustration of testing and learning more about your condition.

I'd also be interested in hearing about your autonomic symptoms (as i have autonomic neuropathy myself) that you mentioned in the new member thread.