1. < Neuropathy

Sural nerve biopsy

Posted by lillian32 @lillian32, Mar 23, 2019

Hi. I have severe peripheral neuropathy confirmed by nerve conduction studies. The results of the test confused my neurologist because it showed mixed axonal and demyelination get neuropathy. Originally I was diagnosed with a systemic metabolic disorder which caused metal transport problems which in turn caused a lot of other issues from bone marrow cancer to spinal cord lesions. I have the metabolic disorder treated and my blood levels are now mostly normal but I’ve been left with a permanent spinal cord injury, peripheral neuropathy and bone marrow failure. Just recently I’ve also been diagnosed with Sarcoidosis.

Anyway, after that long story...my Neuro is booking me for a Sural nerve biopsy to see if there’s any possibility for treatment and hopefully improvement in my neuropathy

Does this story sound familiar to anyone? I’m looking to talk to someone with a similar experience or has mixed peripheral neuropathy.

Thanks.

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

Mentor
John, Volunteer Mentor | @johnbishop | Mar 24, 2019

Hello @lillian32, welcome to Connect. I did a search and found one other member @peggyella who has discussed sural nerve biopsy in a post. She may be able to share some suggestions and experience with you. Are you able to share a little more about the type of treatment you are currently on?

REPLY
1 reply
lillian32 | @lillian32 | Mar 28, 2019
In reply to @johnbishop "Hello @lillian32, welcome to Connect. I did a search and found one other member @peggyella who..." + (show)
@johnbishop

Hello @lillian32, welcome to Connect. I did a search and found one other member @peggyella who has discussed sural nerve biopsy in a post. She may be able to share some suggestions and experience with you. Are you able to share a little more about the type of treatment you are currently on?

Jump to this post

Thank you for answering. How do I find the discussion by @peggyella ? I’m not currently having any Neuro specific treatment. I am admitted to hospital for a week every month for intravenous copper sulphate infusions. I’ve also just been started on Plaquenil for my Sarcoidosis. There’s talk of starting steroids or methotrexate or lefunamide. There’s also a possibility of IVIG or Infliximab. It depends on the nerve biopsy results.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 29, 2019
In reply to @lillian32 "Thank you for answering. How do I find the discussion by @peggyella ? I’m not currently..." + (show)
@lillian32

Thank you for answering. How do I find the discussion by @peggyella ? I’m not currently having any Neuro specific treatment. I am admitted to hospital for a week every month for intravenous copper sulphate infusions. I’ve also just been started on Plaquenil for my Sarcoidosis. There’s talk of starting steroids or methotrexate or lefunamide. There’s also a possibility of IVIG or Infliximab. It depends on the nerve biopsy results.

Jump to this post

@lillian32 here is the post by @peggyella where she mentioned sural nerve biopsy.
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=81#comment-255832

REPLY
lillian32 | @lillian32 | May 24, 2019

Hi. I’m booked to have a Sural nerve biopsy on Monday to investigate the cause of my severe peripheral neuropathy. The nerve conduction studies showed a mix of axonal and demyelinating neuropathy. Looking forward to the results and some answers. Anyone else been down this route?

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | May 24, 2019
In reply to @lillian32 "Hi. I’m booked to have a Sural nerve biopsy on Monday to investigate the cause of..." + (show)
@lillian32

Hi. I’m booked to have a Sural nerve biopsy on Monday to investigate the cause of my severe peripheral neuropathy. The nerve conduction studies showed a mix of axonal and demyelinating neuropathy. Looking forward to the results and some answers. Anyone else been down this route?

Jump to this post

Hi, @lillian32 - thanks for the update. I moved your post so that you might let those in this discussion you previously started on sural nerve biopsy know that you will be having this on Monday to investigate the cause of your severe peripheral neuropathy.

I thought that @artscaping @johnbishop @rpercy7 @salsa @chattty @pfbacon might have some input for you as you undergo this biopsy.

Just wanted to clarify if you are wondering if others have been down the route of sural nerve biopsy, or of nerve conduction studies showed a mix of axonal and demyelinating neuropathy?

REPLY
1 reply
lillian32 | @lillian32 | May 24, 2019
In reply to @lisalucier "Hi, @lillian32 - thanks for the update. I moved your post so that you might let..." + (show)
@lisalucier

Hi, @lillian32 - thanks for the update. I moved your post so that you might let those in this discussion you previously started on sural nerve biopsy know that you will be having this on Monday to investigate the cause of your severe peripheral neuropathy.

I thought that @artscaping @johnbishop @rpercy7 @salsa @chattty @pfbacon might have some input for you as you undergo this biopsy.

Just wanted to clarify if you are wondering if others have been down the route of sural nerve biopsy, or of nerve conduction studies showed a mix of axonal and demyelinating neuropathy?

Jump to this post

Hi, I was wondering both. Anyone who had a Sural nerve biopsy and or mixed peripheral neuropathy and what caused it and any treatment that’s been offered.

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 24, 2019

@lillian32, Good evening. I only had a skin biopsy to determine the severity of SFN, small fiber neuropathy. Having watched the Sural nerve biopsy on Youtube.....I think that procedure goes far beyond the skin biopsy which measures the percentage of the skin sample composed of the small fibers. It had to be sent to Texas for analysis by a special procedure. Mine was definitive for this affliction. I believe that knowledge is power. How can we treat unless we know what we are treating? Good luck and keep posting to let us know the results. Be safe ad enjoy the evening, Chrs

REPLY
1 reply
lillian32 | @lillian32 | May 24, 2019
In reply to @artscaping "@lillian32, Good evening. I only had a skin biopsy to determine the severity of SFN, small..." + (show)
@artscaping

@lillian32, Good evening. I only had a skin biopsy to determine the severity of SFN, small fiber neuropathy. Having watched the Sural nerve biopsy on Youtube.....I think that procedure goes far beyond the skin biopsy which measures the percentage of the skin sample composed of the small fibers. It had to be sent to Texas for analysis by a special procedure. Mine was definitive for this affliction. I believe that knowledge is power. How can we treat unless we know what we are treating? Good luck and keep posting to let us know the results. Be safe ad enjoy the evening, Chrs

Jump to this post

Thank you. I was thinking of asking the neurosurgeon to take a skin biopsy for SFN as well while he was doing the nerve biopsy. I’m not seeing the neurologist to get results for at least 6 more weeks after the biopsy (the neurologist asked the neurosurgeon to do the biopsy). So it’s going to be a frustrating wait.

REPLY
lillian32 | @lillian32 | Jun 2, 2019

Biopsy done. Totally painless. I’ve been told the results can take up to three months. That’s a bit disappointing but all I can do is to be patient.

REPLY
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