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wrong diagnosis

Posted by lrobinson @lrobinson, Mar 8 2:50pm

Everyone be careful if you do not think the diagnosis that you have been given from your Neurologist is correct do your own research. My husband was diagnosed with Pero apathy Neuropathy and you only could treat the symptoms. He was losing his ability to walk and told us that no surgery will take care of it.
After 1 short visit and a few tests he was diagnosed. Which I knew that he DID NOT have Paro apathy Neuropathy.

Luckly, we have a friend who is a Neurosurgeon. We sent all of the tests that the Neurologist requested to him. His first question was were was the Thera sic Spine MRI. The Neurologist was so quick to diagnose him he did do that test.

Obliviously we stopped going to that Neurologist because he had a tumor in his spine that was clearly defined with the Therasic Spine MRI. He has since had surgery and now is on his way to walking again. If we had listened to that Neurologist he would be paralyzed by now. Because the tumor that was growing in his spine at the T4
was responsible for the waste down movement and it was closing up
quickly. Keep asking questions and talk to anyone that you know.

Thankfully we had a friend that knew exactly what was going on!

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

Mentor
John, Volunteer Mentor | @johnbishop | Mar 12 7:18am
In reply to @kfrenc04 "How do you know if you have the right diagnosis? I had the spinal puncture and..." + (show)
@kfrenc04

How do you know if you have the right diagnosis? I had the spinal puncture and that was how I was diagnosed. But, I have a titanium plate in my neck and my back is full of herniated docs. L5, S1, T 11,, 12 & 13. Titanium plate fused together 3 docs in my neck. The vertebrae under plate is bad now to and giving me a lot of pain. So, with the spinal puncture completed, is that a confirmed diagnosis of SFN? Thank you

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That's a good question @kfrenc04. Spine problems can compress/damage nerves which can cause neuropathy symptoms. I'm no expert but I think it may help to keep asking questions in your discussions with your doctor or neurologist. Here are a few references if you want to read more about diagnosing small fiber neuropathy.

"Small-fiber neuropathy is generally underdiagnosed, according to Dr. Khosro Farhad, a neuropathy expert at Harvard-affiliated Massachusetts General Hospital. The problem is that routine neurological exams and tests cannot accurately discriminate between large-fiber and small-fiber neuropathy. "A skin biopsy is a gold standard for diagnosing small-fiber neuropathy; however, this test is not always available," says Dr. Farhad."
--- The big pain of small-fiber neuropathy
https://www.health.harvard.edu/diseases-and-conditions/the-big-pain-of-small-fiber-neuropathy
--- Current View of Diagnosing Small Fiber Neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8075405/
--- Foundation for Peripheral Neuropathy YouTube Channel videos
https://www.youtube.com/@foundationforperipheralneu4122/search?query=spinal%20compression

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1 reply
kfrenc04 | @kfrenc04 | Mar 12 12:43pm
In reply to @johnbishop "That's a good question @kfrenc04. Spine problems can compress/damage nerves which can cause neuropathy symptoms. I'm..." + (show)
@johnbishop

That's a good question @kfrenc04. Spine problems can compress/damage nerves which can cause neuropathy symptoms. I'm no expert but I think it may help to keep asking questions in your discussions with your doctor or neurologist. Here are a few references if you want to read more about diagnosing small fiber neuropathy.

"Small-fiber neuropathy is generally underdiagnosed, according to Dr. Khosro Farhad, a neuropathy expert at Harvard-affiliated Massachusetts General Hospital. The problem is that routine neurological exams and tests cannot accurately discriminate between large-fiber and small-fiber neuropathy. "A skin biopsy is a gold standard for diagnosing small-fiber neuropathy; however, this test is not always available," says Dr. Farhad."
--- The big pain of small-fiber neuropathy
https://www.health.harvard.edu/diseases-and-conditions/the-big-pain-of-small-fiber-neuropathy
--- Current View of Diagnosing Small Fiber Neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8075405/
--- Foundation for Peripheral Neuropathy YouTube Channel videos
https://www.youtube.com/@foundationforperipheralneu4122/search?query=spinal%20compression

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Thank you John.

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