Welcome, skbing5390,

Although I haven't had any experience with small fiber neuropathy, I'm sure there will be someone here who can help you.

You might get more replies if you posted a thread of your own.

Welcome skbing5390.

I went to the neurologist in town following my general practitioners referral. He said small fiber neuropathy. He was not a specialist. I looked for a specialty clinic on my own and asked a neurologist to send the referral. I just had that visit about 10 days ago. They did a couple additional blood tests and nothing came up. They did EMG and NCS. Nothing came up. I wasn't expecting anything because I was suspecting small fiber neuropathy and that is not measured with those tests. But they also did do the skin biopsy. My skin biopsy shows axonal swelling in the distal site. They are increasing my nortriptyline to 25 mg a day. This is still a small dose and most literature doesn't find nor tryptoling better than placebo. They're also starting me on gabapentin. The doctors warned me that gabapentin doesn't really do much for small fiber neuropathy. I've done lots of research. I am in my 6th decade. Literature seems to say that it can arise in people of a certain age. And 30 to 50% remain without a known cause. You can find hopeful paragraphs in literature that say it will plateau. You will also hear horror stories at some people lose all sensitivity in all of their skin. Getting the skin biopsy has actually made me more depressed. I obviously knew that something was wrong. Anyone can read my initial post. But just seeing that pathology was found, ie axonal swelling makes it all too real. When axons swell it is often a prelude to further degeneration. So the question for me will be how widespread will this ultimately go. I hear people's suggestions about stopping sugar, stopping alcohol, etc etc. I have not made any real life changes yet. Sometimes I think we should do like Caroline and avoid the doctors and simply live our lives. I wish you best of luck. We have to make a choice when we are faced with going down the rabbit hole of traditional medicine or avoiding it all together. I do have a follow-up appointment with the neurology clinic in May. I will go I suppose. But something deep inside of me tells me that this will play out however it is meant to. Learning to live life in the moment is more important now than ever.

I think your last comment is an excellent one. Just get on with life. See your doctor or neurologist and you will probably get more info but cannot really help. I am due to see the neurologist in a few weeks but am not really expecting anything from it. My diagnosis is described under my user name Suzyt. I just want to know if my condition will get progressively worse or plateau. Also if I need to warn my son who is 44 of my condition.

I’ll update after my visit but for now I am trying to ignore the progressive increase in the numbness and tingling creeping up my body.

Welcome to the forum and sorry for your diagnosis. Yes, neuropathy is such a beast. One day, you think everything is under control, and the next day you are suffering again. My case is something similar. After months of remission, I have begun to have flare ups again. Done a ton of blood tests, MRI, Nerve conduction studies to no avail. my doctor thinks it is all stress and anxiety related. This forum has helped me a lot and it is a warm feeling to know that you are not alone in the battle, if at all. No medications , but supplements (alpha lipoic acid, acety l carnitine, omega 3 , B12 ) have helped to some extent.

and yes, diet.. It has also helped me.. I got a positive test for gluten antibodies, so, I am on a gluten free diet right now , ..So, worth exploring that option as well, including checking for diabetes/prediabeties.
Nobody knows, where this will lead to, so keeping fingers crossed and hoping for the best .. This disease requires a lot of self-research and self -introspection that is what I have learned in the last two years