A Road on My Multiple Sclerosis Journey

Welcome.

My Diagnosis of MS came/was confirmed in August 2016. I did not think at 31 I would be given a terminal diagnosis. Living on a fixed income and having to ask for help and support or research resources to survive is an invaluable reminder that it's already ok. 

I chose not to be vocal to an extent because of my shame.

In 2018, I finally spoke up on social media platforms, which helpED me learn and slow down as I reflected where I had come from. I will post below my initial GOFUNDME/COMMING out with MS so the comparison can be made : )

It's another time to share as I reflect and push forward.

My original diagnosis has progressed.

Now I have secondary progressive MS, and

this has truly been a wild ride in the last year. I have lost both of my parents in a 6 month period of time, I have moved states, reconnected with family and friends along the way while laughing and celebrating. With that too, I place honor in acknowledging the fact that I lost a lot too, people and lessons I'm still learning from and I’m not stopping.

I start a new disease-modifying medication/disease-modifying treatment, the name of the medication I am taking is Mavenclad.

This specific medication I started researching in 2019(and already had case studies at that point) and I’m now sitting in New York, with an amazing neurologist at NYU, who is able to look at my MRIs and pushed this medication through. We are determined to change the outcome of my diagnosis and how we look at the brain in general.

I'm mentioning this because one of my diagnoses is pseudo-bulbar. It is involuntary laughing and crying at the same time, my mother used to call it all nervous laughter. The doctors told me that the majority of MS patients had it. Well, when I reflected upon my life to see when maybe some of my multiple sclerosis symptoms started, I knew that my body was always uncomfortable however, me laughing and crying at “inappropriate” times and involuntarily I was able to pin, Not just once, twice but events that when I brought them up to friends, they were on the same page. Lots of aha moments.

I'm starting a whole new GoFundMe five years later.

This is a new starting point, on my own.

I also want people to know about this brand new medication. It has not always been used for this type of treatment. While reading about the frontal lobe and markers where my MS has caused the most damage- Also

I found that my body does not react well to infusions and so this is a pill form of the medication.

I started the treatment in September of last year and at the end of this September 2023 will be my second and hopefully last treatment.

Thank you for being along with this journey, and sharing your own, and connecting over the multiple waves and ways we have come into each other's lives. Five years later, and I’m in a wheelchair( insert other hardaches ) living on my own & I feel more confident and comfortable in my own experiences now than moving across the country for the first time all by myself.