A bit more depth...

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