1. < Neuropathy

Small Fiber Neuropathy

Posted by wjones159 @wjones159, May 26, 2018

Good morning,

I have been diagnosed with SFN, and was a bit alarmed at my biopsy results. I have read over a lot of the symptoms and discussions others posted, and did not want to be overly redundant, so in the interest of keeping this post marginally analytical, I was hoping you could give me an idea of the severity of the results.

The lab states that low density is in the range of 6.2-6.8 for the thigh. My observed density was 0.07. For the calf the low range was 4.8-5.4 and my observed was 0.67.

Those numbers seem extremely poor and depressing. Is it as bad as the numbers would seem?

Thanks for any thought you can provide
-Scott

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

budjo611 | @budjo611 | Aug 25, 2023
In reply to @johnbishop "Sorry, should have explained a little more. It's basically non-drug treatments. The link above for the..." + (show)
@johnbishop

Sorry, should have explained a little more. It's basically non-drug treatments. The link above for the Foundation for Peripheral Neuropathy's Living Well page has a link to a better explanation - https://www.foundationforpn.org/living-well/complementary-therapies/. Also, there is a link on the page that has a PDF list of all of the different treatments and supplements that people have found helpful - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

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I’ll check it out. Thanks.

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daj3333 | @daj3333 | Aug 26, 2023

Has anyone tried low dose naltrexone. I’ve been on 3 mg for two weeks now. So far not much difference. How long does it take to kick in if it works at all? Would be interested in hearing from those with experience

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bb0753 | @bb0753 | Aug 26, 2023
In reply to @budjo611 "I’ve tried many combinations of meds. Including different antidepressants. None seem to help much. As for..." + (show)
@budjo611

I’ve tried many combinations of meds. Including different antidepressants. None seem to help much. As for alternatives, I’ve tried medicinal THC. No help, and I hate being high. Just makes me more depressed about my pain and loss of mobility. I was very athletic. Skiing, tennis, hiking, golf. All gone!!!!!! As for complementary, not sur what you mean.

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Do you know the cause? Do you have diabetes for example, b6 toxicity, b12 deficiency or did doctor do extensive blood work? If you cannfind the cause there is possible help

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1 reply
budjo611 | @budjo611 | Aug 26, 2023
In reply to @bb0753 "Do you know the cause? Do you have diabetes for example, b6 toxicity, b12 deficiency or..." + (show)
@bb0753

Do you know the cause? Do you have diabetes for example, b6 toxicity, b12 deficiency or did doctor do extensive blood work? If you cannfind the cause there is possible help

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I’m not diabetic. First test I received. I’ve had an MRI on my back and extensive bloodwork. I’m considered idiopathic. I’m hoping the next specialist will be more vigilant. But that won’t be till January. Just trying to hang on for now. Pain in feet is 24-7. Leg mobility is about 60%, but it’s getting worse.
Not giving up, but extremely frustrated!!!

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1 reply
bb0753 | @bb0753 | Aug 26, 2023
In reply to @budjo611 "I’m not diabetic. First test I received. I’ve had an MRI on my back and extensive..." + (show)
@budjo611

I’m not diabetic. First test I received. I’ve had an MRI on my back and extensive bloodwork. I’m considered idiopathic. I’m hoping the next specialist will be more vigilant. But that won’t be till January. Just trying to hang on for now. Pain in feet is 24-7. Leg mobility is about 60%, but it’s getting worse.
Not giving up, but extremely frustrated!!!

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Mine too was diagnosed as idiopathic but my b6 blood test was 5 time upper normal. B6 can cause neuropathy. Fortunately I don't have pain and know several who do. I hope you find answers.

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jchet | @jchet | Aug 26, 2023
In reply to @budjo611 "I also had nerve biopsy on one leg. It confirmed SFN. Severe pain in feet and..." + (show)
@budjo611

I also had nerve biopsy on one leg. It confirmed SFN. Severe pain in feet and ankles. Sometimes extends to the waist. No pain in upper extremities. But walking very painful!! Awaiting an appointment with highly recommended specialist on SFN at Mass General hospital. But it’s not till January 24. Made the appointment in February!!!! Very frustrated!!! Very depressed!!!!!

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Please let us know how you make out with the Mass General hospital. I’m wondering if it’s with Dr. Anne Oaklander.

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1 reply
harley22 | @harley22 | Aug 27, 2023
In reply to @budjo611 "I also had nerve biopsy on one leg. It confirmed SFN. Severe pain in feet and..." + (show)
@budjo611

I also had nerve biopsy on one leg. It confirmed SFN. Severe pain in feet and ankles. Sometimes extends to the waist. No pain in upper extremities. But walking very painful!! Awaiting an appointment with highly recommended specialist on SFN at Mass General hospital. But it’s not till January 24. Made the appointment in February!!!! Very frustrated!!! Very depressed!!!!!

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I can relate as I have same issues as you.
Very frustrating when no one can help you!

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budjo611 | @budjo611 | Aug 28, 2023
In reply to @jchet "Please let us know how you make out with the Mass General hospital. I’m wondering if..." + (show)
@jchet

Please let us know how you make out with the Mass General hospital. I’m wondering if it’s with Dr. Anne Oaklander.

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Correct!! It is with Dr. Oaklander. I’ve listened to some YouTube lectures. It’s like she’s describing me!!!!! Spot on description of what I feel. Not sure she will be able to help me, but at least she already knows what I’m experiencing. It was difficult to explain my symptoms to past neurologists because my sensations were so hard to put into words. Sometimes I felt like they thought I was crazy. The third neurologist suggested the skin biopsy. It came back positive unfortunately. He seemed surprised!!!! He didn’t seem to know where to go from there. Just more pills!! I see Dr. Oaklander in January. It gives me some hope, if nothing else.

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2 replies
sf2021 | @sf2021 | Aug 28, 2023
In reply to @budjo611 "Correct!! It is with Dr. Oaklander. I’ve listened to some YouTube lectures. It’s like she’s describing..." + (show)
@budjo611

Correct!! It is with Dr. Oaklander. I’ve listened to some YouTube lectures. It’s like she’s describing me!!!!! Spot on description of what I feel. Not sure she will be able to help me, but at least she already knows what I’m experiencing. It was difficult to explain my symptoms to past neurologists because my sensations were so hard to put into words. Sometimes I felt like they thought I was crazy. The third neurologist suggested the skin biopsy. It came back positive unfortunately. He seemed surprised!!!! He didn’t seem to know where to go from there. Just more pills!! I see Dr. Oaklander in January. It gives me some hope, if nothing else.

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Please let us know how it goes with Dr. Oaklander. She is a well known specialist in SFN. Mine is idiopathic as well. It would be great if we can get the benefit of what she has to say (I know everyone is different). Good luck.

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1 reply
budjo611 | @budjo611 | Aug 28, 2023
In reply to @sf2021 "Please let us know how it goes with Dr. Oaklander. She is a well known specialist..." + (show)
@sf2021

Please let us know how it goes with Dr. Oaklander. She is a well known specialist in SFN. Mine is idiopathic as well. It would be great if we can get the benefit of what she has to say (I know everyone is different). Good luck.

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Thanks. I’ll make some comments and recommendations as they happen. Just going to have to wait till January. Seems a long way off. Hope there’s no blizzards on January 25th 2024!!!!!

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