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hazyeclipse

797d

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..

Top reply
    • tallgirl22

      796d

      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 :/

    • tallgirl22

      796d

      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 :/

    • Peonies

      797d

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

      • hazyeclipse

        797d

        @Peonies 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 :(

    • Peonies

      797d

      ❤️ 🙏

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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