Reply To: Waiting for diagnosis, looking for support

March 30, 2018 at 3:24 pm

Thanks for your support. I found out on Tuesday that my genetic test was positive. Bit of a shock as we don’t have much family history.

On Wednesday I got acute urinary retention and had to be admitted. I am still in the hospital, still got a catheter and my neurologist is majorly confused as to what is going on. He says this is definitely not just HNPP as it doesn’t cause autonomic problems and I now have numbness on my body not just my limbs.

Been for an MRI today which all looks fine. Have no idea what is happening now.