How to understand the Skin Biopsy (Small Fiber Neuropathy)

Hi David @davidbressler, welcome to Mayo Clinic Connect. Have you used Google Scholar for searching before? (https://scholar.google.com/) I use it a lot when searching for research and the latest medical topic information. It turned up quite a bit of information that may be helpful when I did a search using the phrase "skin biopsy +neuropathy". I also clicked the year 2018 at the left to sort what it finds in newest to oldest order. Here is a link with the search results:

-- https://scholar.google.com/scholar?hl=en&as_sdt=1%2C24&as_ylo=2018&as_vis=1&q=skin+biopsy+%2Bneuropathy&btnG=

You might also want to do a Google search using "Matthew B. Jensen neuropathy youtube videos". He has a lot of videos that explain the different neuropathies that are easy to understand.

Since you've tried a lot of different treatments, I'm assuming you have pain with your symptoms. I have idiopathic small fiber PN but I only have the numbness and tingling with no pain. I use over the counter supplements that help some with my symptoms but there is no real cure for neuropathy. The drugs just mask the pain and come with their own set of side effects over time. I posted my PN story and what works for me in an earlier post here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I have no medical background or training but I don't think anyone can give you much insight for what you can expect in the future. We are all different and the disease progresses differently for each of us due to a lot of different factors. Are you able to share a little more about your symptoms and how you are affected?

John

Thanks John,

I have not used Google Scholar, so that'll be fun to explore!

As with everyone else, it's a long story. I'll keep it brief.

It's been going on about 4 years (I'm 51); when I first got treatment, they assumed my foot/leg pain was a pinched nerve, and I got a steroid shot into my spine. I then got two infections... the timing was too much of a coincidence, so it led to a flurry of evaluations. I was also trying to track my pain to see what if anything helped/hurt... I was hypervigilant, which was awful.

In any case, about a year and a half in, I had my first small fiber neuropathy diagnosis via skin biopsy.

I feel like I've had every blood test on the planet; mostly normal. DNA normal too. Recently, I had an out of range lambda/kappa in my urine. That spun up another round of deeper diagnosis, and it looks like I'm just at the start of kidneys not working as well as they could.

The only thing the blood tests ever turned up was that I was not covered for pneumonia. I've had the vaccine and it "took" almost as well as they'd like, but I didn't retain as much coverage as the doctors would have liked.

The thing is, you never know what's related. And, all the different medical investigations take a lot of time, which has an impact on work.

Anyways, I have a rash below my knees/elbows, pain/tingling/numbness below knees and elbows. I have some hand limitations, though tests for strength and such don't show weakness. The pain is really bad. I'd say I'm usually at a 5 or so. My muscles are always sore (mostly legs / hips, but also hands). Acupuncture helps. Gabapentin makes me suicidal. I've tried cymblta (helped, but the help wore off while the side-effects did not). I've tried medical marijuana. Nortryptaline (?). Now I'm trying lyrica. I'm also on something for my kidneys.

I get really tired from the constant pain. For example, on weekend days with my young kids if I start with them at 8AM, but 2 or 3, I need a nap. And I have a hard time walking because of aches.

It's hard because the family doesn't really understand.

And, about a week or two ago, I noticed a heavy tread on my left foot and wonder if that's the start of "foot drop".

To top it off, I'm a world-class athlete. I'm struggling mentally with facing losing that, and I struggle to train the way I'd like.

Thanks David. I know it's a struggle but I'm hoping you can find something that works for you. It won't help with the neuropathy but my favorite pick me up site is https://www.resilientoption.com/ where you will find a lot of positive energy and uplifting short videos.

My neurologist took a photo with his phone of my beautiful example of hammer toes on someone with peripheral neuropathy. He asked me if I minded if he used them for a seminar he was working on. It did give me a moment of levity. Don't let the struggle get you down. Just take it one day at a time, one step at a time.

Thanks. At work they tell me I have a ton of energy, and I'm always thinking "if you only knew how much pain I was in, you'd be doubly awed."

David, thank you so very much for Resilient Option and all of the other valuable information you provide to us all!

I sure appreciate you!

Rose