Natalie Ng
I started having symptoms in my right thumb in 2013. I was pregnant at the time, so every doctor I saw wrote it off as carpel tunnel and told me to come back if it didn’t go away once I gave birth. Needless to say, it didn’t! My whole hand, then slowly my wrist and arm, became super weak and I struggled to lift things, do up buttons, and use cutlery. My doctor found I had a B12 deficiency and said my arm nerves must have been damaged from that and once I got my levels up through supplements, nothing else would progress but the arm damage was permanent.
Fast forward to 2021 and the COVID-19 vaccine – unfortunately, I reacted to the vaccine that landed me in hospital with uncontrollable fasciculations and trouble with a foot drop on my right side. I was told by the emergency doctors it was all in my head and they admitted me to a mental health unit for 2 days. I mean, wouldn’t you be having a panic attack if your arm wouldn’t stop twitching for hours on end? The psychologist there realized my symptoms were physical and not mental and called in a neuromuscular specialist. A couple of blood tests later and anti-GM1 antibodies were found. A couple of EMGs later and conduction block was found in my arm.
Finally, in early 2022, I had a diagnosis called Multifocal Motor Neuropathy, a rare disease that had taken me 9 years to identify. I immediately went to Google and Facebook and found the Foundation with all its resources. Reading other people’s stories, and posts on Facebook, it was apparent I’d found my people! Patients just like me who had trouble with everyday stuff like using a pen, typing, and some days just getting out of bed felt like a mountain to climb. Suddenly I was not alone!
I’ve been having IVIG treatments every 3 weeks since Sept 2022 and it’s made a huge difference to my functionality. I’m one of the lucky ones who literally walk in using a cane on treatment day and walk out without needing it. There are still some things I cannot do – forget about ironing a shirt or doing up a button, but I can write and type again for short periods and have a good quality of life back again. I’m so grateful to have found a diagnosis, a treatment (even if it’s not a cure!), and a community of amazingly inspirational people to commiserate and celebrate with!
