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hazyeclipse

Updated 10mo ago

New Diagnosis of Small Fiber Neuropathy

I just found out I have small fiber neuropathy. in some areas, it's already severe. Which now explains why I have pots/dysautonomia and my tingling and burning hands and feet, and probably explains my GI problems. it's surreal.. no one found much up until now aside from pots and a brain MRI with a couple of abnormal (but not immediately threatening) findings, but it was all elusive. Has anyone else felt almost in disbelief after getting a new diagnosis? to finally start getting some answers? it's also validating. I'm so used to being dismissed, or things just coming back normal or vague, that I keep getting these thoughts like what if the results were mixed up or mistaken? logically I know it's probably not though. although I still need to find what's causing the sfn now and some other stuff I'm dealing with, it's nice to have found another piece to the puzzle..

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Peonies

2y

❤️ 🙏
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Peonies

2y

I have small fiber neuropathy too and so much is linked—the pots, all the stuff. I completely get it.
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hazyeclipse

2y

did you find out what's causing your neuropathy? My rheumatologist thinks I may have an autoimmune condition, my blood work all came back normal though.. she said beforehand that I could be seronegative (I had the blood work done 3 years ago as well) though and that she might still treat me. I have a follow-up next week. I hope that I'll get some answers.. but I know some people never find out the cause :(
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tallgirl22

2y

I feel this way too, I also feel like I can’t accept most of my diagnoses because I feel like my doctors will change their minds and say that’s not what I actually have because that has happened in the past. I also am diagnosed with small fiber neuropathy on my chart but no doctor told me to my face so I don’t even know who diagnosed me or if it’s a mistake :/

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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