Seronegative MOGAD is stripping my life away at 36.

Have you ever heard of MOGAD before? No? Neither had I. According to Google, 1-3 people of 1,000,000 are diagnosed with MOGAD each year, with no known statistics for seronegative MOGAD.

I have been suffering for years. Silently struggling with symptoms that sounded ridiculous and with no answers that led me feeling ashamed and depressed because when you are constantly 'sick' and going to hospital and from doctor to doctor, only to be told your suffering mirgrains, well no one is going to take you seriously. My headaches were severely disabling. I was popping nuerofen like malteasers, feeling sick, loosing my vision, my balance and what felt like my mind. I couldn't keep a job because I was so unreliable due to my symptoms. I was always tired and angry which of coarse affected those around me. Especially my kids. Things got seriously bad in December of 2024. I needed to hold onto my kids to cross a road, or do a food shop. I was falling over, I was loosing feeling in my left arm and leg. By Feb 2024, I was rushed to boxhill hospital under a stroke code. I wasn't having a stroke. I was diagnosed 3 days later after finally receiving a MRI with Multiple sclerosis.

I spent weeks at a time in and out of hospital due to my symptoms flaring back up constantly. I was the diagnosed with MOGAD, then further seronegative MOGAD.

MOGAD (myelin oligodendrocyte glycoprotein antibody associated disease) is an autoimmune condition where your immune system attacks proteins in the protective cover around your nerves (myelin). It causes symptoms that affect your eyes, brain and spinal cord, like vision loss, confusion and muscle weakness.

I myself suffer from seronegative MOGAD which means despite having clinical and radiological features consistent with MOGAD, I test negative for MOG antibodies.

If your not confused by all of this, I take my hat off to you, because I'm still extremely confused as to what it all means. I just know that this is slowly but surely taking my life from me.

My name is Michelle (Chell) and I'm from a small country town in rural Victoria. I'm the youngest of 4 children with 3 older brothers.

I'm 36years old with 3 beautiful children, my oldest is 14, and I have 2 sons who are 8 and 9. I'm honestly blessed as my children are hands down beautiful, kind and well behaved kids. Every day I live for them. In October of 2024, I was lucky enough to meet the love of my life and despite my health issues and being a single mum of 3 kids, he took us all in with open arms. He drives me to and from every medical appointment and hospital visit. He cares for me and my kids better than I've ever known.

I have always loved writing and decided I would try write a blog about my condition and struggles. If I can encourage just 1 person who has any symptoms similar to mine to push your doctor to get you into that MRI machine, then in my eyes that's a success.

I encourage questions and will write again explaining my symptoms in a little more depth soon.

Please feel free to leave a comment or even email me.. mxchel22@hotmail.com

For more info check out MS Australia's website https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=https://www.msaustralia.org.au/&ved=2ahUKEwi1vd-9uMOMAxXbdvUHHc7PEl8QFnoECAwQAQ&usg=AOvVaw1KfxYaUSM5M1G-9V2eLdlS

Much love, Chell xx