1. < Neuropathy

Non-Length Dependent Small Fiber Neuropathy

Posted by kathleen123 @kathleen123, Feb 22, 2021

there is much discussion of PN but seldom is much said about non-length dependent neuropathy. I guess it must be relatively rare. The condition affects all different parts of the body. I think it is usually idiopathic as is mine is. I was diagnosed with it more than 10 years ago. I’d like to hear from others with this type of small fiber neuropathy.

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aaron_az | @aaroncush | Apr 18 7:03pm

I struck out in the what is causing it department. I felt good that I had a treatment plan for if/when things got worse. Then my doctor left the practice and am back to square one - still no definitive diagnosis and back to no treatment plan.

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shordae | @shordae | 2 days ago
In reply to @sf2021 "Hi. I have similar symptoms which include my face (more on the left side) and my..." + (show)
@sf2021

Hi. I have similar symptoms which include my face (more on the left side) and my tongue in addition to my limbs. I am in the beginning stage (idiopathic) of this illness. Have the symptoms gotten worse over years? If so, how fast did they progress? Thanks very much.

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Did you ever find out a cause for yours

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1 reply
shordae | @shordae | 2 days ago
In reply to @kathleen123 "I was diagnosed in 2010. The progress was relatively slow at first. Even now my face,..." + (show)
@kathleen123

I was diagnosed in 2010. The progress was relatively slow at first. Even now my face, mouth, ear, nose scalp and eye discomfort is not very bad usually. My limb pain, numbness, tingling, burning and pins and needles have gotten substantially worse in the past year or so.

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Do you know what caused it?

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sf2021 | @sf2021 | 1 day ago
In reply to @shordae "Did you ever find out a cause for yours" + (show)
@shordae

Did you ever find out a cause for yours

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No. I went to top neurologists in New York but no one could figure out the cause (even have done genetic testing). I am now just treating the symptoms. Unless there is significant advancement in medical technology, I don’t think I will ever find out. I hope you can find your cause.

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1 reply
suetex | @suetex | 1 day ago
In reply to @sf2021 "No. I went to top neurologists in New York but no one could figure out the..." + (show)
@sf2021

No. I went to top neurologists in New York but no one could figure out the cause (even have done genetic testing). I am now just treating the symptoms. Unless there is significant advancement in medical technology, I don’t think I will ever find out. I hope you can find your cause.

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Have you had a Sjogren's work up? It is a big cause of SFN although, mostly length dependent, I think.

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