Oh how I wish I had chronicled the last three years of this health journey in detail. I'm thinking this after reading Susannah Cahalan's "Brain on Fire". I can't describe the connection I felt to this book. She said certain things that could have been taken out of my mouth. This girl dealt with an undiagnosed neurological condition for too long, and she made it. Her condition made her deal with psychosis, and while that's not what I'm dealing with (thankfully), there are so many symptoms she dealt with that I relate to. How weak she became, her ataxia, her tests coming back normal, her dozens and dozens of neurological exams, and the fact that they didn't even know if it was neurological or not... all things that are currently part of my life. As a matter of fact, at this point I could probably give you a neurological exam if you needed one. I hope one day I can write a book about my story. This coming week I'll be spending 48 hours hooked up to an EEG machine for a sleep study with a great neurologist. I'm hoping he can get at least some sort of clue from this. The next week we'll be traveling to Hamilton, Ontario to see a neuromuscular specialist who was able to diagnose my friend Derek after him going 10 years undiagnosed. Derek has been the most amazing help and friend to me. Hearing about this doctor gives me hope. When I read his reviews and even hear about him from Derek he reminds me of Dr. Najjar in "Brain on Fire". He was Susannah's Dr. House and I hope maybe this doctor will be my House.
I had a urodynamics study this month and the results concluded that I have a neurogenic bladder. Vesical sphincter dyssynergia, they call it. Next week I will be learning to self-catheterize which I think will be great because I won't have to run to the emergency room anymore when I'm in retention.
Here comes the whiny part:
Some good things are also happening lately! I was asked to write my story for Beyond Type 1 which is a global community for Type 1s. In their words... "Our goal is to highlight the brilliance of those fighting this disease every day while always working toward ensuring a cure is on its way". Nick Jonas is a co-founder of this amazing project and my mom and I absolutely love it, so this was pretty exciting for us!
And that's life lately. Thanks for reading if you did! Maybe things will finally look up from here.
Michelle
I had a urodynamics study this month and the results concluded that I have a neurogenic bladder. Vesical sphincter dyssynergia, they call it. Next week I will be learning to self-catheterize which I think will be great because I won't have to run to the emergency room anymore when I'm in retention.
Here comes the whiny part:
- My worst symptoms these days have included my usual muscle weakness, but also a ton of muscle twitching that is quite a nuisance! These twitches are visible to the eye and happen mostly in my butt, my back, and the backs of my arms and legs.
- I seem to be in a bit of a nerve pain flare. My nerve pain has always consisted of patches of skin feeling like they're burning, but they used to come occasionally at night when I'd go to bed, and now they're happening all the time.
- Along with my usual tremor, my limbs have been involuntarily jerking. Sometimes causing my brand new phone to go flying. More often though the jerks are smaller. This is actually something one of my doctors noticed before I did, and of course now I notice it all the time.
- I've had trouble chewing for the past 8 months, but it seems to be getting worse. Things that are hardest to chew for me are burgers, lettuce and candy of course, and when I'm having trouble chewing, food often falls out of my mouth and my mouth feels numb :/ It reminds me of my almost 90 year old grandfather eating. Problems swallowing have also been progressing, and I'm grateful that I can still swallow and some things just get stuck in my throat and it's hard to initiate the swallow.
Some good things are also happening lately! I was asked to write my story for Beyond Type 1 which is a global community for Type 1s. In their words... "Our goal is to highlight the brilliance of those fighting this disease every day while always working toward ensuring a cure is on its way". Nick Jonas is a co-founder of this amazing project and my mom and I absolutely love it, so this was pretty exciting for us!
And that's life lately. Thanks for reading if you did! Maybe things will finally look up from here.
Michelle