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.

jchet | @jchet | 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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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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1 reply
budjo611 | @budjo611 | Aug 28, 2023
In reply to @jchet "Oh, lucky you! Please, please let me know what she says (if you don’t mind). I..." + (show)
@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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1 reply
jchet | @jchet | Aug 29, 2023
In reply to @budjo611 "No worries. I’ll get it out there. A little luck maybe. But I pushed hard and..." + (show)
@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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budjo611 | @budjo611 | Aug 29, 2023

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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1 reply
jchet | @jchet | Aug 30, 2023
In reply to @budjo611 "Oddly, I read an article about SFN from an Arizona pharmacist whose husband has SFN. She..." + (show)
@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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cc8 | @cc8 | Nov 22, 2024
In reply to @bruces "Thank you so much for the information, I’ve been diagnosed with SFN in the last year...." + (show)
@bruces

Thank you so much for the information, I’ve been diagnosed with SFN in the last year. it has stopped my life. The onset has been very fast within 6 months from slight tingling in my hands and feet to total numb legs and arms. SFN seems to now be consuming my torso including bowel and bladder control. This may seem insignificant in comparison to the pain we’re all going through BUT I’m curious if other people are seeing hair loss. I was a very furry guy, with thick hair covering all of me. But within one month most all my body hair has fallen out. Have other people experienced this? And if you have has any one had it return at any point?

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Yes-

Along with my other symptoms of non- length dependent polyneuropathy -

The acute attacks plus chronic progressive damage symptoms for 50 years that started at age 13.

In my early 20’s my eyebrows thinned and the outer half disappeared - as decades progressed I lost all the hair on most of my legs -

Other areas thinned as well

Since diagnosis last year( IgG vs FGFR3 ) and being on Prednisone my eye brows have grown back and so has the hair on my legs.

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shordae | @shordae | 6 days ago

By chance did you have any numbness? Did that get better? What do you do for treatment now? I have the FgFR3 too but nobody knows anything

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