is it small fibre neuropathy? (SFN)

Posted by smiddy73 @smiddy73, Jun 22 6:04am

is it possible I don't have SFN? My diagnosis was, in my opinion, a bit iffy. No test was done , like a skin biopsy. Other possibilities were eliminated though, like large fibre neuropathy using MRI scans and a nerve conduction study. And the neurologist specialised in dementia with general neurology issues dealt with in addition.
At present I am receiving no treatment, My feet are my problem with my left foot by far the worst, including ice coldness, sometimes burning, always tingling etc. I have signs of foot drop too plus a lump, or swelling has appeared at the bottom of my leg just before the foot.
I was then told I had adult onset fallen arches, collapsed in my left foot.
Lo and behold , when I googled these symptoms I got tarsal tunnel syndrome( or compression of the tibial nerve). I was amazed. That's what I've got I thought !! I was seeing a podiatrist( using National Health Service(NHS)). After an ultrasound and 2 MRIs on the lump area I'm no more the wiser. After the first MRI I was told it could be a swelling on a tendon but come back in 4 months for a further MRI. I did this and am totally unclear about the nature of this lump. I did explore my theory about TTS but that was rapidly kicked into touch. " You have small fibre neuropathy" I was aggressively told.
I bought custom made insoles to help symptoms of my fallen arches---pain in the legs in particular. They did help the leg pain but my parasthesia in my left foot seemed to worsen plus I had to but shoes a size bigger than my size. Asa cynic I can't help but wonder if money is more important than a proper diagnosis.
I made a decision recently to find out more about TTS. That led me to arrange a consultation with a Foot and Ankle specialist. He is an orthopedic surgeon too. And deals a lot with professional sports people, footballers, rugby players etc. I am not a professional sportsman, never have been but was very active over the years---football at top amateur level, league table tennis, cycling and more. I only recently stopped league table tennis, still cycle and go to gym.
I told him my symptoms and and that i had been told I had age related peripheral neuropathy. He said he thought I had tarsal tunnel syndrome. But my choice was to either put up with it or have surgery to decompress the tibial nerve. I was initially elated to have been right about this. I do have medical insurance but, after the consultations with neurology at considerable cost and suffering a huge hike in premiums I chose to switch Insurers. I thought the help I was getting from the NHS would cover me in future on the foot front. So I would have to do this as a self funded exercise. Not a problem, especially if it helped my foot issue.
Doubts have since crept in. He didn't call for any tests for example.Maybe a bit matter of fact. Money motivated?? I asked if I should try physiotherapy but he just said " put up with it, or do surgery"..
I'm now trying a few physio exercises to help TTS, to relieve pressure on the tibial nerve. I may be too late of course as I've had this for 5 years. But I'm still a fighter. I've 3 holidays coming up and need my legs..

Interested in more discussions like this? Go to the Neuropathy Support Group.

I should have said, I'm 75. And I cannot claim on Insurance as it'll be seen as a pre-existing condition..

REPLY

Hi @smiddy73, I'm wondering if @jeanniem might have some thoughts or suggestions as she posted a similar discussion and mentioned TTS. You might find it helpful to read what has been shared in her discussion here:
-- Illusive Diagnosis, Pain Increasing: https://connect.mayoclinic.org/discussion/illusive-diagnosis-pain-increasing/.

There is also an older discussion on TTS that might provide some more information:
-- Can someone tell me about Tarsal tunnel syndrome? Treatments?
https://connect.mayoclinic.org/discussion/tarsal-tunnel-syndrome/

REPLY
@johnbishop

Hi @smiddy73, I'm wondering if @jeanniem might have some thoughts or suggestions as she posted a similar discussion and mentioned TTS. You might find it helpful to read what has been shared in her discussion here:
-- Illusive Diagnosis, Pain Increasing: https://connect.mayoclinic.org/discussion/illusive-diagnosis-pain-increasing/.

There is also an older discussion on TTS that might provide some more information:
-- Can someone tell me about Tarsal tunnel syndrome? Treatments?
https://connect.mayoclinic.org/discussion/tarsal-tunnel-syndrome/

Jump to this post

Thanks, John. Very helpful..

REPLY

Kudos to all of you with your tenacious but frustrating search for answers and remedies. It seems to be a focus in life after 70. I find as a completely healthy couple, we are now searching for answers for unexplained pain and complications. It is exhausting at a time in life when you want to be having fun instead of working! Good luck to all!

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My SFN started in my toes, sort of crept up my legs, then went to my hands, fingers wrists. I’m about eight years in now and eating gabapentin by the handfuls doing just fine and about nine years south of your age.

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