Skin Biopsy for diagnosing Small fiber peripheral neuropathy

Hello @rpierro -- welcome to Mayo Connect. I also have idiopathic small fiber peripheral neuropathy and was diagnosed in 2016 after 20+ years of already knowing I had peripheral neuropathy but not getting a diagnosis because they told me they couldn't do anything anyway. I only have numbness with my neuropathy and do not have any pain. My only concern was someday losing my ability to drive. I would have a conversation with the doctor about your concerns - why do the tests unless there is some treatment that will help you as an outcome for the diagnosis.

You are your best advocate.

John

Thank you! that is my feeling as well. Hoping you are doing fine after 20 plus years with this? I also have no pain and walking and driving are my biggest fears as well as how much further it could progress. Have a nice weekend. Rose

Hi Rose, there are a few more active neuropathy discussions that you may want to read through if you are looking for more information.

Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Anyone here dealing with peripheral neuropathy?
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/

When I first started talking with my doctors about the tingling and numbness in my toes and feet I wasn't too worried about it. I started looking for a diagnosis when it was in both legs to just below the knees. You can read the rest of my journey here if you want:
-- https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=6144dd1510

Have you found anything that helps you?

John

I went thru a series of tests and finally a skin biopsy that the Neurologist said confirmed that I had SFPN. Then all she could do was prescribe pain meds, which have so many high risk side effects that they are useless for me.

The skin biopsy is over in 5 seconds. A small patch or plug of skin is taken above the ankle after a spray of lidocaine. A band-aid and you are good to go. The analysis in a special lab (mine went to a Texas) determines the percentage of small nerve fibers in a defined area of the sample. The report will tell you your actual percentage and the desired percentage range. Just for reference, my sample was .09% The desired range was over 8.5%. Quite a difference and an important step in the diagnostic process and in the selection of a treatment program.

thank you so much for your response. Since I don't have pain now, my biggest concern is stopping the progression. I'm fairly certain that none of the doctor's have anything to stop progression from what I've learned so far, therefore I've decided to wait on the skin biopsy and continue vitamins and supplement treatments for now.

Thank you for your feedback on this! It sure helps to hear everyone's struggles. Yes, from what I've seen there isn't a good treatment other than pain medication. Fortunately for me, I do not have pain with this (so far) I've decided to not do the skin biopsy for now and continue on with vitamins and supplements. My best to you.

Hi John, Thank you so much for this information. This has helped me to decide what I think is the right treatment for me at this point. As for what helps me that I know, I continue to walk about 3 miles a day - which helps my back issues (they say is not the cause of my neuropathy, but I'm doubting this) I have tried Bcomplex and alpha lopeic acid that didn't seem to do anything however several doctors say there is multiple evidence these may help for some. I'm going to try more multi vitamins and supplements and continue B Complex. I notice the tingling is worse after yoga which to me says it could be related to back or hips somehow even though the MRI says no. I have one alcohol drink a day and am considering stopping that thinking it may worsen the tingling, but hey life is too short to cut out too much right? I feel fortunate that I don't have the pain associated with my neuropathy and since I'm active during the day, night time and when I'm sitting is the worst reminder of the tingling and drives me nuts trying to think of the cause.

Hi Rose, I don't have any medical training or background but I would be cautious with the B complex if it contains high doses of B6. It's real easy to get B6 toxicity which can make peripheral neuropathy worse.

-- http://www.easy-immune-health.com/vitamin-b6-toxicity.html

I'm with you on the feeling really luck to not have pain associated with my PN. I do hate the uncomfortable feeling in the feet, can't sit, can't stand, can't walk very far. About the only time I don't think about it much is when I can focus my mind on something else. I also stopped all alcohol when I started taking the supplements specifically because it's also can make neuropathy worse.

I wouldn't beat yourself up trying to think of the cause of the neuropathy. I went to a neuropathy support group meeting a year or so ago and listened to a few speakers, 2 of which were neurologists. The last speaker was an 80 year old research neurologist who said you know how the term idiopathic came about when diagnosing neuropathy? I busted out laughing when he told us it's from the idiot neurologist making the diagnosis.

Hope you find something that works for you.

John