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

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@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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Oh, lucky you! Please, please let me know what she says (if you don’t mind). I hope I don’t miss your post in Jan. 👍🍀

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@jchet

Oh, lucky you! Please, please let me know what she says (if you don’t mind). I hope I don’t miss your post in Jan. 👍🍀

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No worries. I’ll get it out there. A little luck maybe. But I pushed hard and persevered!!!!
Sometimes the best advocate for yourself, IS YOURSELF.

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@budjo611

No worries. I’ll get it out there. A little luck maybe. But I pushed hard and persevered!!!!
Sometimes the best advocate for yourself, IS YOURSELF.

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I couldn’t agree with you more. Just curious…..where do you live? I am here in Baldwinsville, N.Y. (Near Syracuse, N.Y.)

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Oddly, I read an article about SFN from an Arizona pharmacist whose husband has SFN. She did a lot of research and described in detail what he was going through. It was very informative and a spot on description of symptoms. She recommended Dr. Oaklander in her article. I live just north of Boston, so it seemed like I finally got a lucky break. Jumped through a few hoops and managed an appointment. A long wait!!!! Hope it’s worthwhile.
Google Suzy Cohen and SFN. It’s an excellent article. I found it by chance while doing my own research. There’s also a link to a lecture from Dr. Oaklander at Vanderbilt. That’s when I knew I had to have a consult with her.

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@budjo611

Oddly, I read an article about SFN from an Arizona pharmacist whose husband has SFN. She did a lot of research and described in detail what he was going through. It was very informative and a spot on description of symptoms. She recommended Dr. Oaklander in her article. I live just north of Boston, so it seemed like I finally got a lucky break. Jumped through a few hoops and managed an appointment. A long wait!!!! Hope it’s worthwhile.
Google Suzy Cohen and SFN. It’s an excellent article. I found it by chance while doing my own research. There’s also a link to a lecture from Dr. Oaklander at Vanderbilt. That’s when I knew I had to have a consult with her.

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Thanks. I’ll “read up” on Suzy Cohen!

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