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.

Liked by Jim W

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?

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@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?

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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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@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.

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Thank you.

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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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@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?

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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?

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@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?

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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.

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@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

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@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

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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.

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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.

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@lillian32

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.

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Good for you @lillian32. You get the advocacy badge. You sought a diagnosis, researched the skin test procedure for small fiber neuropathy ( SFN),and requested it from your neurologist.

And now you wait. That situation makes you anxiety prone as your mind projects the different outcomes while you continue to wait. And that is an awfully long time. I hope your neurologist explained that there are only a few labs that are performing this analysis. So what did he/she recommend that you do for your pain and discomfort while waiting?

Do you practice meditation and mindfulness? That can be helpful. And of course we are here to support you. @jenniferhunter has a discussion about Myofascial Release Therapy (MFR). My experience has found that to be life changing for dealing with SFN. Please post again as you progress through the wait. Be safe and secure today. Chris

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Hi, I’m very lucky? I don’t get a lot of pain. My main problems are numbness, loss of proprioception, ataxia and falls. I have confirmed myelopathy too so I don’t know what symptoms are from myelopathy and what are from neuropathy.

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@lillian32

Hi, I’m very lucky? I don’t get a lot of pain. My main problems are numbness, loss of proprioception, ataxia and falls. I have confirmed myelopathy too so I don’t know what symptoms are from myelopathy and what are from neuropathy.

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@ lillian32 Here is the Myofascial release discussion that Chris mentioned.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Don't worry about what's what if you try MFR with a therapist, just be present in your body and feel how it changes during a session. I had some mild myelopathy too from spinal cord compression, and MFR has helped me a lot.

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@jenniferhunter

@ lillian32 Here is the Myofascial release discussion that Chris mentioned.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Don't worry about what's what if you try MFR with a therapist, just be present in your body and feel how it changes during a session. I had some mild myelopathy too from spinal cord compression, and MFR has helped me a lot.

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Sorry I’ve taken so long to thank you for your reply. Unfortunately my myelopathy was caused by a lesion in the posterior columns and is almost like an incomplete SCI so it’s not treatable. I’m seeing my neurologist tomorrow and I’m hoping to get my nerve biopsy results. I’ll keep you updated on any findings.

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I got my results today. It shows axonal degeneration with active inflammation and evidence of previous vasculitis. Basically the neurologist is confused by the results. He even phoned the anatomical pathologist himself to get more information. So, there’s talk of being started on immunosuppressants and or steroids. Basically the biopsy resulted in more questions than answers.

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