"Waiting for results"

Alright, story time. Had a lumbar puncture at Ninewells, Dundee, neurology dept., been waiting almost 2 months for my results. Then a covering secretary told me my follow-up was just a routine check-in, so naturally I cancelled and asked to be contacted only when results are available to ensure that my case wasn't approached as a presumptive MS case or a test example… only to find out later the appt was literally to talk about my results. Now I get to wait over a month again just to get the info I need. ugh.

Look, the system is messy. It’s bureaucratic. It’s easy to get lost in it, and sometimes feels like it’s playing hide and seek with your health. But don’t be scared to be that nightmare patient who calls, emails, asks questions. If you don’t advocate for yourself and push, the system won't. Your health, your peace of mind, your answers they’re worth the hassle.

Huge love to Heather, Head Charge Nurse, who actually made sense of the confusion and helped me figure out what was really going on. Honestly, people like her make a chaotic system feel human again.

Update: Royal Mail lost the letter with my results and the secretary just read it out to me. there was presence of oligoclonal bands in my CSF. Oh man. Huge thanks to Ann the secretary for cutting through the chaos. you’re a legend, seriously.🫶