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PostPosted: December 30th, 2014, 11:55 am
by Buzznerd123
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Re: Small fiber neuropathy

PostPosted: December 30th, 2014, 12:17 pm
by veryworried123
Never heard of it but interesting

Re: Small fiber neuropathy

PostPosted: December 30th, 2014, 12:34 pm
by Ghayes420
I have not had this skin biopsy but I always wondered the role that SFN has with BFS.

I find the studies you shared very interesting and I will bring these to the attention of my neuro at the Mayo clinic during my follow-up exam in a couple weeks.

Thanks again for the contribution.

Re: Small fiber neuropathy

PostPosted: December 30th, 2014, 3:54 pm
by leaflea
Great contribution Buzznerd. I see you joined almost a year ago and this is your first post. Obviously you have done some "research" and find this important enough to share - it is not recycled news. Thank you! Interested in your other thoughts too. The association again with sodium channels comes up again.

Re: Small fiber neuropathy

PostPosted: December 30th, 2014, 6:37 pm
by Scboy
I just got back from Duke University and was told I likely have small fiber neuropathy. They said I could have biopsy but it really wouldn't change anything by knowing for sure so I refused. It's a long drive for me. He did say it can get better with time. Gabapentin, diet and exercise is the treatment of choice for "mild" small fiber neuropathy. They have immune suppression drugs also but not recommended for my "mild" case.

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PostPosted: December 30th, 2014, 6:41 pm
by Buzznerd123
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Re: Small fiber neuropathy

PostPosted: December 30th, 2014, 7:13 pm
by emmie.s
Thanks so much for posting this. One of my neurologists mentioned this about two years ago, and she said that would explain why my EMGs were normal: because as you said it doesn't show up well on the EMG's. She also told me that the biopsy was maybe not worth the time/$ because what would it accomplish, she already knew that whatever I have is benign.
For those on this forum wanting a definitive answer as to WHY, etc...this is a great bit of info.

Re: Small fiber neuropathy

PostPosted: December 30th, 2014, 8:53 pm
by leaflea
Thank you Buzznerd, (love your moniker). Nothing you wrote fans fear flames. Valuable info. Welcome your posts any day! Thanks!

Re: Small fiber neuropathy

PostPosted: December 30th, 2014, 9:17 pm
by Ghayes420
I too find this fascinating as well and (unfortunately) sparks my interest in yet again finding a causation.

Please correct me if my math is wrong but estimated 80% of BFS has SNF (say 80 out of 100). 20 left over with no cause

And out of those 80% with SFN 30% have an unknown, idiopathic causation (80 x 0.3 = 24). 20 + 24 subjects out of a 100 or 44% of BFS dx still without causation.

Mayo told me that 10% of BFS cases they can tie to an autoimmune condition and my guess that would tie directly to SFN.

I also have seen numerous topics brought up on herpes and bodywide fasciculations. It is well known that the herpes virus itself can cause small fiber neuropathy.

I hope this doesn't mean I have to give up my nightly wine!

Great stuff here Buzznerd!

Re: Small fiber neuropathy

PostPosted: December 31st, 2014, 4:51 am
by Buzznerd123
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Re: Small fiber neuropathy

PostPosted: January 2nd, 2015, 6:22 am
by raindog
Neuropathic pain is my main concern about my condition. I feel after 8 years the pain at onset was 0/10 and today it would be 8/10.

I have had chronic denervation since my first emg over 6 years ago and i know what i have going off has been slowly progressive in all aspects ie cramping fascics and pain. My next neuro appointment on the 19th of this month i am asking for a sural / muscle biopsy and my VGKC abs doing again after learning that some assays are not accurate

Anti-VGKC antibodies are biomarkers
for acquired neuromyotonia, but
prevalence is highly dependent on the assays
used. With radioimmunoassays, <65%
of neuromyotonia patients have VGKC antibodies.
By comparison, IIF is much more
sensitive, detecting up to 100%.

Re: Small fiber neuropathy

PostPosted: January 2nd, 2015, 11:20 am
by Buzznerd123
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Re: Small fiber neuropathy

PostPosted: January 2nd, 2015, 7:37 pm
by raindog
Buzznerd123 wrote:Raindog,

Do you have any pain in other areas than your feet?


Both lower legs from the knee downwards,,,most of my pain is at outside (lateral aspect) both legg also the area below my calf near the Achilles tendon and both feet. i'm also struggling to stand on my tip toes or just toe walk because of a constant severe cramp but heel walking is fine.

Re: Small fiber neuropathy

PostPosted: January 4th, 2015, 2:45 pm
by Buzznerd123
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Re: Small fiber neuropathy

PostPosted: January 15th, 2015, 4:18 pm
by Scboy
I am getting the small fiber skin biopsy done at Duke next month. I am having some autonomic symptoms which made my neurologist more interested in getting me tested.