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Non-Length Dependent Small Fiber Neuropathy
Neuropathy | Last Active: Oct 4 4:36pm | Replies (131)Comment receiving replies
@kathleen123. I was recently DX with patchy NLD SFN. My symptoms of burning sensations, pain, numbness and tingling are only in my feet-mostly in my right foot. I’m on 2700mg of gabapentin but I’m not sure it is really helping. My doctor ran some blood tests to determine the possible underlying reason as it’s not diabetes. It might be Fabry’s Disease, which I’m still investigating. It’s frustrating and sad to get an SFN diagnosis since they just look at you and say “we will treat the symptoms” and it “may or may not progress up or down your body.” I try to stay positive and I make sure I advocate for myself as you really won’t get any help if you don’t push the doctors for tests and changes in meds, if needed.
Replies to "@kathleen123. I was recently DX with patchy NLD SFN. My symptoms of burning sensations, pain, numbness..."
Hi. I'm on 3600 mg of gabapentin spread out at 8 am noon, 4 pm and 8 pm. Helps my on pain in my feet by around half depending on the time of day and load on my feet. Johnmacc
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It is very discouraging to have non length dependent neuropathy. I may have it throughout my entire body, or just in my legs and arms. It’s horrible when it’s in your face and mouth. You literally cannot brush your teeth. It feels like you’re brushing with a wire brush.
Unless you go to a specific neuropathy physician you will continue to get those non helpful answers. It’s true there is no cure, but caught early it can be slowed down. Find a good neurologist. Mine was a 8 hour round trip but as hard as the drive was on me it greatly benefited me and resolved several issues.
I’m realizing that the majority of neuropathy is idiopathic. They may never know how we got this. It’s a terrible disease and because you “look” normal you often don’t get support from your family and friends. This includes you primary physician.
My heart goes out to you. Just remember to eat well and take vitamins that address your issues. Today you will be better then tomorrow. 😢