Help Michelle Dance Again

Hi. I'm Michelle and I am an MS warrior. My battle began in 2006 when I lost use of my left leg for a few months. In 2009 I began having recurrent bouts of Optic Neuritis which causes predominantly temporary vision loss, only ever in one eye at a time, thankfully.

Our brains are amazing machines. During the first few years of attacks, the brain is able to repair itself leaving no trace of disease behind. This is why it generally takes years for diagnosis.

By 2012, the disease started to get the better of me. After an MRI finally revealed brain lesions, a spinal tap confirmed that I had Multiple Sclerosis.

People assume diagnosis is traumatic and scary. After years of struggles without answers, it's actually a relief and an opportunity to begin treatment.

I began with Copaxone, giving myself a daily needle for 3 years, 3 months, and 3 days. I won't lie.... it kinda sucked.

Unfortunately, by 2015 , relapses and new lesions in my brain and spine showed the drug wasn't working for me.

I was excited that the next treatment, Tecfidera, was a pill. I had high hopes as it was a newer and more effective medication. To my dismay, it's gastrointestinal side effects seemed more debilitating than the disease. I suffered through for 15 months before I gave up.

I decided to take a break from treatments to see how I faired. I had a few good months before a major relapse landed me in the hospital.

The next drug I chose to try, Tysabri, was quite an experience. It's a monthly infusion by IV that takes a full day. My first infusion went swimmingly. Barely any side effects at all. I got my hopes up a little too soon. My body created antibodies toward the drug so my second infusion caused a super scary severe allergic reaction. I then learned why these medications are supposed to be delivered by well trained staff in a medical clinic with a doctor on site.

My failure with this drug was crushing as the alternatives all had lists of side effects pages long. Literally.

Luckily, a new drug called Mavenclad had just hit the Canadian markets. It's a low dose short course of a chemotherapy drug, Cladribine, previously used only for hairy cell leukemia. Treatment consisted of two 5 day periods one month apart, repeated a year later. So, a total of 20 days of pills. Luckily the side effects were the same as regular chemo for cancer , only, to a way way lesser degree. It really did take the good out of me for a couple of years. Luckily, at the 2 year mark, I began slowly improving. This past summer was my best in a decade and I worked like a horse.

I feel like I am beating MS. I feel like this most recent battle may have won me the war.

Although I was not cured, I didn't imagine I could feel any better. Walking with a bit of swagger and some balance issues seem like nothing compared to where I've been. If this is as good as it gets, I would be more than satisfied.

However, as it turns out, I may have reason to be overjoyed. I have been invited to participate in a medical trial in St. John's , Newfoundland, for MS patients with mobility and balance issues.

The study will be combining physiotherapy with a device previously used in patients with brain injury. The device is worn in the mouth and stimulates the brain, increasing neuroplasticity. That's your brains ability to repair itself. It allows people to regain previously lost function. Miraculous. That's what that is.

I am overjoyed to have the opportunity to participate .

Perhaps when I finally get to wed Seth and walk down the aisle, it will be a straight trip without issue!

A girls' gotta dream!

As this is a medical study, and not yet an approved treatment, I will need to cover transportation costs. If it were a big drug company they could easily foot the bill. This study is funded by research grants, so, they are only able to help with transportation costs for people within the city.

I will need to travel to St. John's, NL for two weeks initially. Then I will carry on with my program at home. I will need to make 3 additional shorter trips for assessment over a 10 month period.

I just can not let this opportunity pass me by. I have come so far. Please help me complete this last leg on MS treatment journey. I want to conquer this disease completely and dance at our wedding.

I'll save a dance for you!!!

Thank you so much,

A hopeful Bride and MS Warrior

Michelle