I Have Small Fiber Peripheral Neuropathy (and More!)

Hello, 
I have wonderful support on Facebook, but such limited contact with other fairly young (is 31 young?) people with Small Fiber Peripheral Neuropathy.
My case is quite different and not textbook-style at all. My symptoms, at least the pain, started in my hands and forearms. 
I had large-fiber peripheral neuropathy at first, beginning with Radial Nerve Palsy (wrist drop) - left arm twice, right arm once; Ulnar Nerve Palsy in my left arm that wasted my muscles terribly, carpal tunnel (Median Nerve damage, still suffering from that) and a left foot drop from Peroneal nerve entrapment. I have muscle wasting in both legs.

Local doctors knew I had something more going on than peripheral neuropathy when conventional measures didn't help and the pain was intensifying. So many gave up on me, including family. If they can't see it on the outside, except when I'm wearing a brace or using a cane, no one believes me. Even wearing the devices, I'm told to be exaggerating my condition. It doesn't help that I was diagnosed with Narcolepsy with Cataplexy in April 2009.

My symptoms began the summer of 2009, but I was diagnosed with Idiopathic Small Fiber Peripheral Neuropathy by a team of fantastic neurologists at The Mayo Clinic in Jacksonville, Florida - August 2011. To this day, I still make the 2.5 hour drive there every couple months to see a rheumatologist and sleep doctor. 

To be specific, according to the QSART (Quantitative Sudomotor Axon Reflex Test,) it was determined to be moderate, length-dependent, post-ganglionic sudomotor deficit, pretty much in a nutshell: distal small fiber peripheral neuropathy affecting sudomotor neurons.

Alright, I consider myself intelligent, but I really don't know much more than the fact that I have SFPN. I do have Autonomic symptoms that bother me greatly. Hyperhydrosis in some places but I don't sweat in other places, urinary retention, orthostatic hypotension, sinus tachycardia and now, most noticeably, what is probably gastroparesis.  I wonder if anyone can tell I used to work in the medical field? 

Life was a living hell when I didn't have a diagnosis. I had my neurologist ask me, "Why do you want something to be wrong with you?" I broke down in tears, and she got on the phone with Mayo Clinic and had me seen within a couple weeks. Nobody wants something to be wrong with them. But to be discarded, ignored, and invalidated for years, getting  diagnosis then was my #1 goal in life. Granted, it is considered Idiopathic at this point, but I am okay with that knowing I have a team of doctors following me. 

Idiopathic: adj. id-i-o-path-ic: The doctor is an idiot, and you're pathetic. 

There are a few other health problems I have, but to stick with the subject, I wanted to share my story. I'm hoping someone can relate. Maybe there's someone out there waiting for the validation they deserve. If there is, don't lose hope. Be your own advocate. 

Thanks for letting me share.

Jennifer


jcs23 jcs23
31-35, F
2 Responses May 24, 2012

Hello!
I am 31 as well. I have PN and it affects my feet/legs and hands. It is so hard sometimes. The pain, depression, loneliness, and miss understanding of others. It would be amazing to have a friend in the same boat.

Jennifer,
Well I am "young", and forever will be, at heart. I am 52, and diagnosed this year after living in the burning, stinging, pins/needles, knife stabbing, feelings of hell for the last 9 months of my life. I love your definition of idiopathic, I could not agree more. I live in Hawaii and even two Drs here told me I have to get off the "rock" to find a decent Dr. At least now I know why I have all these terrible sensations, but for me, the question is and will always be "WHY?" I have to push and push for every test I want done. I feel for you and am grateful to the internet for letting us reach out to one another for support and help. Anytime you want to contact me, please do. I want to come to Mayo Clinic, my Dr said she would give me a referal, to hopefully get to the root of this. Aloha and take care..Dawn