Dear Eric,

I didn't even notice any symptoms, until I was diagnosed with Profound Peripheral Neuropathy. I discounted my stumbling and slowness as 'being out of shape'. I found it harder and harder to walk any distance and up hills.

I didn't have any particular pain with the neuropathy in my feet and legs. The diagnosis was made 9 years ago. I used to ski,, ride a bike, hike, I wasn't an athlete but I did lots of fun things.

Now I have leg braces and walk with a walker. And I have many neuropathies in other parts of my body. The Small Fiber Neuropathy is very painful and I take Gabapentin for it.

No cause for my neuropathies has been established through testing (and I've had ALL the tests several times). My Immunologist believes that my own Immune System mistakenly attacks my own body, damaging the nerves is various parts.

When I had sciatica recently (2006) and it was unbelievably painful, I had a laminectomy and it stopped the sciatica completely.

It is hard to be so disabled,, and to have no cure or even treatment to slow down the progress of the disease.

Regards, ElaineD

Hi @ericvnelson. I’m sorry you’re having such a hard time. I read your post with interest, especially as it relates to the leg numbness and laminectomy. I had spinal fusion/laminectomy surgery a year ago. Much more involved than just a laminectomy, however, I had previously been diagnosed with small fiber neuropathy - SFN. After the surgery, 3 things happened:
1. I developed foot drop in my left leg. To this day, the core of my left leg and my left foot are permanently numb. When I came home from surgery, I could walk with a walker only.
2. It turns out, there was a nerve which was pinched and after the laminectomy part of the surgery and the disturbance of the surgery itself, that nerve worsened for lack of a better term. It’s crushed. In most cases, after a year whatever you’ve lost with nerves isn’t coming back.
3. My SFN went crazy. Numbness, tingling, pain, cramps, etc. got worse

Now comes the GOOD part. It’s a year later and after a few months of pain meds, and laying on the couch wondering what’s next, as I was doing PT three times a week, I realized exercise helped my symptoms. All of them. So after three months of home PT, i “ graduated” to outside PT. I researched and found the best PT person I could. Went and visited, discussed my challenges, and felt he understood. As I got stronger, my pain level started to drop. Little by little. After graduating from three months with him, I went to a strength trainer associated with my PT guy. I work out three times a week with him. Even with the numbness, he helps me combat the instabilities. The difference has been remarkable. I still have days where I can hardly get out of bed, but my stamina and strength continue to grow. I know it sounds counterintuitive to exercise when you’re in pain, but it’s the best thing for you. I take Lyrica for the neuropathy, it helps but it’s not a cure all. Knocks the symptoms down a bit. I use cannabis in vape and flower form, CBD cream. It takes a while to settle into a new normal. Give yourself some time. A therapist can help you feel like your not crazy. I do yoga occasionally. Very helpful. I’ve learned it helps me to have a “toolbox” to help me control and cope with my limitations. But, they are far less today than they were a year ago. I wish you well. Hang in there

Hello Eric @ericvnelson, I would like to add my welcome along with @elained and other members. I also have idiopathic small fiber PN that I've had for more than 20 years. I also only have the numbness with no pain. The numbness had reached just below the knees in both legs when I first started on Connect. I started taking some supplements that provide the nerves the nutrients they need and within a couple of months the numbness went to just above the ankles and that was the end of 2016. I'm still taking the supplements but I haven't made any more progress. The numbness still feels like it's just above the ankles. Even so, I feel it's a win for me and just means I have a new normal. If you want to know more about it, I've posted all the details in more story in an earlier post on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You mentioned you recently had laminectomy decompression surgery but you haven't noticed any difference. Did the doctor/surgeon say how long it might be before you notice any improvement?

I'm tagging @jenniferhunter who may be able to provide some insight or more information for you.

I know it's not much comfort but you are not alone. Keep asking questions and learning as much as you can about your health condition. You are your best health advocate.

John