Does Small Fiber Neuropathy always start in the feet?

Hi @raepent1, I know from your posts you've done a lot of research on your own. I'm not a doctor or medical expert but I'm pretty sure doesn't always have to start in the feet. Mine did more than 20 years ago but only numbness and it actually started at the tips of the toes if I remember right. I'm not sure if you have run across any YouTube videos by Matthew B. Jensen who is an Assistant Professor of Neurology, University of Wisconsin. He does an excellent job of explaining in laymen's terms a lot of neuropathy topics. I first learned about him through this video that gives a good explanation of how the different neuropathies are diagnosed.
Approach to neurological syndromes - https://youtu.be/3FrQ7Glvgok

He has quite a few videos on neurology that you might find helpful for learning more on his YouTube channel here - https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ

Thank you so much for those links! I haven’t heard of him or even ventured into YouTube in my quest for random answers (although it seems to be my go-to source for household how-to’s, so why wouldn’t I haven’t I thought of that before!?)

I’m 41 years old & it’s like I was on the edge of turning 40 and then my “middle-aged” life started or so I thought. It’s been like unraveling a ball of yarn, one finding leads to the next, to the next etc. and it’s so crazy because some of these symptoms that occurred, I’ve actually had them since childhood, just never had tests.

So when this SFN thing turned into a possible diagnosis, I was just so bewildered why my neurologist referred me out, when most articles state it’s diagnosed by a Neuro- lucky me, my neurologist doesn’t do that procedure. Apparently it’s another unicorn in my sky, as has been a lot of other things over the course of all this. Rare and Uncommon are all too common in my book.

Thank you again so much!!!

@raepent1 I have not had all of the symptoms you have had, but wanted to chime in on your question about SFN always starting in the feet. I've been wondering the same thing because I have read so many stories about people whose neuropathy started that way, but mine did not, so thank you for the question. I don't know why I never had the sense to ask it. I've never had any problem in my feet or hands, but was recently diagnosed by my 2nd neurologist as having SFN.
Just FYI, mine is localized in my back, chest, shoulders and arms. My arms can get very irritated by fabric against them, and like most other people with SFN it is worse at night. My legs can get irritated by the sheets against them at night, and sometimes, strange as it sounds, I can feel the quilt penetrating through the sheets and irritating my body.
It's not an easy journey, and everyone's is a little different. Bless you! I hope you get the help you need very soon!
I, too, want to thank @johnbishop for his recommendation of the video by Matthew Jensen. I'll take a look at it soon. John always has great recommendations.

John - just looked at the video on Polyneuropathy which is my dx and you are right, he explains things clearly and in simple terms. My neuropathy actually started in 2007-08 in tips of toes and had the feeling of cotton balls stuck on bottom of toes with slight numbness. I looked at just one video so far and have learned a lot. Thanks for posting the info. Ed

Length dependent SFN vs non-length dependent SFN. This is what the skin biopsies will tell you, and it will answer your questions. There is a big difference between the two types. My skin biopsies were done at a pain clinic. I think a dermatologist could also do them. The biopsies were not complicated. It’s knowing how to send them to a lab that’s complicated.
You could read about the two types of SFN while you’re waiting, and that might give you some helpful information. I have length-dependent, which definitely started in my feet.
Good luck.

Mine started out only one side of my face. Then my arm, and lastly my my foot and leg in that progression. It was and still is predominantly one side of my body. I was tested for MS, and everything under the stars for two years. I live in NYC so I had access to supposedly top neurologists. At the end, they don’t know the underlying cause. I had the same question when they took the sample from my lower leg and thigh. The neurologist said taking the samples from these locations are the gold standard of this biopsy. Whatever that means. Now I’m just trying to manage the symptoms. Gabapentin and duloxetine help but there is never a day when I am without pain.

I hadn’t heard of the 2 different versions, so thank you so much for that! And the suggestion to get it done at a pain clinic?! That’s priceless information in my quest - I’m flying solo in the search since my neurologist’s office is still dark from the hurricane. I do have a lab that will process & send the test kit so I have that puzzle solved! Thank you so much for sharing!

My “progression” is almost exactly like yours - this odd tingling on my left side only and mostly hands/arms/shoulders/upper body so evenings in the FL humidity where every single dust particle or invisible flying insect is felt causing miserable evenings to enjoy on the porch. I’m not sure if it’s possible SFN or the AI disorders, but over the past year, I feel so uncoordinated as though my finger tips have lost all ability to grab small objects on the counter, button without frustration and removing the feminine liner from their packaging, I’m using my whole fingers to do this and not just fingertips. I do feel them in my legs, but only occasionally. I have noticed though when I first wake, my feet and toes have the “asleep” feeling for a long time before I feel like I can put them on the ground.

I’ve been on Pregabalin for months, upped the dose a couple of times, but doesn’t seem to make any difference. If you find surefire ways to make these “shocks” go away (without complete hippie/holistic/ultra clean diet change), I’m all ears! Best wishes to you in your quest for relief!

Left side of *face…didn’t finish the thought apparently 😉

Thanks. For me, when I woke up in the morning, my fingers and toes were so stiff I had to pry them open. I even went to see a rheumatologist who took X-rays. He said I did not have arthritis. I think it is due to SFN. I added duloxetine (Cymbalta) to the gabapentin, and it made a huge difference in pain level and my fingers and toes. I was hesitant to add an anti-depressant but it significantly lowered the pain level for me including the stiffness in my fingers and toes and the electric shocks.