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

@lillian32

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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@lillian32 – thanks for the update. Sorry to hear you're feeling like the biopsy resulted in more questions than answers. Sounds frustrating.

When will you find out what treatment the neurologist wants to proceed with?

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@lisalucier

@lillian32 – thanks for the update. Sorry to hear you're feeling like the biopsy resulted in more questions than answers. Sounds frustrating.

When will you find out what treatment the neurologist wants to proceed with?

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He’s going to contact my haematologist, physician and respiratory physician. Together they’ll consider the best treatment options. I don’t expect any news for 3 months.

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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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Hi, @lillian32 – wondering how you are doing and how things are going with the numbness, loss of proprioception, ataxia and falls you talked about?

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