HNPP
Hi everyone,
I’m 24, a computer science student and part-time 3D jewelry designer. I was recently diagnosed with HNPP and I’m trying to understand how to adapt to it.
I have numbness and loss of sensation in my hands and legs, pain after long walks, and symptoms that have become worse over the last few months. I also have pain during everyday activities, even from holding my phone or using my laptop for a while.
Two months ago, after light exercise, my legs became temporarily very weak, which honestly scared me a lot.
Today I saw a genetic neurologist, and he told me that adaptation and lifestyle changes are very important with HNPP.
I wanted to ask people here:
What helped you the most after diagnosis?
Did your nerves recover over time?
How do you manage exercise and daily life?
Thank you for any advice or experiences.