Update--Results back--questions
 

Okay so the lady said that my numbers are great--15.9, 18.8, 20.1. She said everything was normal except that the pathologist said that there are occasional axonal swellings. Are these swellings enough for a diagnosis? Or are they normal? Could they cause tingling and burning feet?

Anyone have any input or thoughts about what the doctor will say and if this along with symptoms are sufficient for a diagnosis? Awaiting his call but don't think he'll call today.

Dreamer... I will be interested to hear your doctor's impressions regarding the axonal swellings. I, too, have normal nerve fiber densities from the thigh and calf but axonal swelling noted in the morphology portion of the report. My doctor said that some axonal swelling is not unusual, especially as we age, and since my densities were normal I don't technically have SFN. I have never been fully convinced of that, as I sit here burning from head to toe. All he will concede is nerve pain in a non-length dependent distribution. Let us know!

Thank you so much for replying. He did say a negative biopsy doesn't mean I don't have it, but we'll see. That's awful that you're burning so much and your doctor won't give you a firm diagnosis. Have you had other tests for SFN? I read something about a sweat test.

I really want to know why my feet burn and tingle and why I have so many autonomic issues and why my backs so bad, but it's exhausting going through lots of testing...I have a feeling my doctor is going to send me for more tests and I do not think I'll hear back from him until next week.

Thank you again very much.

Hey dreamer
So when I got my results back (a couple years ago) my ENFD was also normal - 8 at the calf and 9.71 at the thigh (they wouldnt give morphology because my age - 19 at the time). However - my SGNFD number in the thigh was significantly reduced (29.2) which was like one strike for SFN. Then I had a QSART test (http://my.clevelandclinic.org/servic...-testing/qsart here is a description) which also showed reduced sweat production in the thigh (which matched the skin biopsy SGNFD results). Did you also have SGNFD done with your biopsy? I guess what I am trying to say is that there are other ways to come to the same diagnosis!

Dreamer... I also went to a Cleveland Clinic neurologist who agreed with my local neuro that occasional axonal swellings weren't enough to DX me with PN and that they can occur in asymptomatic people. The only sweat testing I had done was one where I was hooked up to a monitor that measure sweat in response to a sudden fright. It wasn't a biopsy or SGNDT that I know of.

Thanks everyone:) I've got a feeling I'm in for more testing.

Was your sweat test positive?

I don't think an 'occasional axonal swelling' will be enough to firm a Dx of SFN. It may be a sign that a process has started though. Axonal swelling is NOT normal, so 'something' caused it, and therefore another test 6 months down the road may reveal more important information about what is going on. Your symptoms may be new enough that the fibers aren't showing the damage normally seen with SFN...YET. Maybe Glenntaj will see your post and comment in the morning with more detail information.

Sorry, I don't know your history...How long have you experienced the burning? If more than 6-9 months, that my theory is probably not possible.

You mentioned autonomic symptoms. Can you elaborate on this? How long have these symptoms been present?

Have they considered autoimmune disease? Have you been tested for various autoimmune conditions?

They have. I have been tested for a bunch of things, and was told to see a rheumatologist b/c of the negative bloods. My B12 was a bit low though--in the low 300's. I didn't see a rheumy b/c I knew I was seeing this neuro, and didn't want to see too many new doctors. Don't really like to go to doctors at all and so I've been basically living with this for years, but managing with modifications and Lyrica does help. I was wondering tho if it's possibly causing my joint pain and swelling in my hands.

Nope...this has been going on for years. I actually had to wait a couple years to see this doctor...and he was so confident! I've been managing well, until my feet got worse. Honestly, if someone could fix them, things would be so much easier.

I do have back problems from an accident and for years I thought my back was causing this pain, BUT I actually did suspect PN a while ago. But I have back problems so live life daily in pain...constant pain, but I thought my feet were coming from my back before I saw this doctor.