chellz22-blog

[chellz22-blog]

https://gofund.me/f14032cb

[chellz22-blog]

https://gofund.me/03bf890a

Please share and donate I'm begging you. My medications are so expensive and I have 3 kids to care for.

[chellz22-blog]

Woken by the worse MS hug attack I've had in ages.

[chellz22-blog]

Do you ever feel like you spend your life talking but no one actually ever hears you? Such a horrible lonely feeling.

[chellz22-blog]

I have so much to be greatful for so why is my soul so heavy?

[chellz22-blog]

I feel so broken today

[chellz22-blog]

In my last post I said I would talk about my symptoms and diagnosis a bit more so here we go..

I can honestly say that I've been 'sick' and struggling with what I believe are symptoms my whole life. I remember always being in the sick bay at school but things really kicked off about 6 years ago. So from 2020 onwards I suffered with freezing cold feet, poor circulation (if I stand in one spot for a short period of time some of my toes turn purple) back pain, constant horrible headaches, tingling/pins and needles in left arm and left leg. Everyday nausea. I was admitted to maroondah hospital several times where I was placed on a drip with a medication for migrains and when I complained that it wasn't helping they sent me for CT scans and xrays and sending me home. With the tests Showing nothing. Doctor to doctor and it was the same response, your suffering migrains, here's a script and sent me home. Nothing worked. I was sick, miserable and fucking angry. In December 2024 my body had, had enough. I took one final leap of faith and saw a different doctor. There aren't many in small country towns and as it turns out none of them could seriously be bothered dealing with me. I cried for months. I felt like no one believed me. I started having episodes lasting maybe tops of 2 minutes of vision loss/depth perception, no balance, slurred speech. I was having anywhere from 10 to 15 of these episodes PER DAY. Oh I forgot to mention the constant tremors of both hands. I could no longer work in beauty therapy because my tremors just wouldn't let me do nails.

I was suffering chest pains that were so bad I could barely scream for help, the pain so intense I was completely panicking. That ended in a couple of hospital trips also, but no answers. I was loosing feeling and movement in my left arm and leg. It was a typical Australian summer here and I simply could not bare the heat, I was sick, dizzy and had horrible pain in my lower back and between my shoulder blades.

I knew what I was feeling was serious even if no one else believed me. I couldn't even get through a conversation without having an 'episode' which my family and I called, buffering. It honestly felt like my body was buffering.

A close friend of mine, gave me $750 to see a private neurologist. The neurologist was instantly concerned and thought i was having a series of mini strokes. He wrote up a big list of tests for me to have and told me if anything changes then call an ambulance.

The next day I spent the day time keeping for my daughters school swimming sports. I was really enjoying my day but was tiring quickly and left early. That night I couldn't sleep I was dreadfully uncomfortable and didn't feel right. By 2am I went to my mum and told her I needed help. She called an ambulance and within 45minutes, I'd lost complete feeling and movement in my left arm and leg.

Skipping forward a few days I had my mri. The very next morning I was told I had lesions in my optical nerves, brain and spine/lumbar.

The actual reports read as such;

Multiple demyelinating plaques are seen within the upper cervical cord at the level of C2 and C2/3 measuring 14mm each in the craniocaudal dimension. Further demyelinatine plaques at the cornus measuring 15mm and 2mm.

Suspicion of bilateral optic neuritis.

Multiple cord lesions.

There are multiple supratentorial periventricular white matter T2/FLAIR hyperintense foci, largest within the right frontal lobe measuring 9mm. Multiple white matter lesions in the temporal lobes, mid brain, pons and a lesion within the right paramedmedian medulla measuring 9mm.

Multiple small lesions within the cerebellar peduncles as well as multiple lesions within the cervical medullary Junction and in the upper cervical cord at C2/3. Further 5mm right C3 cord lesion.

I don't understand half of what that means and i did leave some of it out because there was just so much but basically I am more advanced with my condition as they would hope someone of my age would be. It's been 14months since my diagnosis and I still have most of the above symptoms but now I'm also suffering seizures. Things get really hard. Obviously some days are worse than others but I have so much peace and love in my life. I'm blessed. Finally getting a diagnosis after all those years honestly felt like a relief. I no longer have to try convince people that I'm sick. I'm not crazy after all. Super weird and socially awkward but not crazy.

If you made it this far, then, thank you.

Much love, Chell xxx

[chellz22-blog]

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