“A day with Myasthenia Gravis is like the cliff hanger at the end of a movie”: Interview With MG Blogger

At FindMeCure we believe that patients’ voices are central to any conversation about treatment – this is why we’re so passionate about sharing their stories and interviewing them for our blog. There are as many different Myasthenia Gravis experiences as there are people who live the spoonie life but even stories very different from our own can make us feel less alone and give us hope that a happy fulfilling life with a chronic illness is possible.

Today we introduce you to Morgan from Is Was Will Be who describes herself as “A spoonie living her illest life through mental wellness and a toxin free lifestyle”. Morgan wants to inspire you to find your own happiness and see life with Myasthenia Gravis as a journey.

How did you get diagnosed with Myasthenia Gravis and how much time did it take?

I was diagnosed with Myasthenia Gravis in May of 2016. I had been experiencing strange symptoms such as droopy lid, double vision and headaches. I thought I was having sinus or allergy issues so I scheduled an appointment with an ENT (Ear Nose and Throat doctor) who over course told me I was fine. Then I scheduled an appointment with an eye doctor who during the exam noticed one of my eyes weren’t moving. They instructed me to get an MRI done and referred me to a neurologist. When I saw the neurologist he immediately recognized it as myasthenia gravis but told me I would have complete formal testing to confirm. It took about 3 months from my first scheduled doctor appointment to official diagnosis. But looking back I had been experiencing other symptoms such as difficulty chewing and swallowing and leg weakness for about 6 months prior.

What happened next? Were there any treatment options for MG at that time? How many different therapies have you tried so far? Has your doctor suggested clinical trial options to you?

After the neurologists diagnosed me, I was put on Mestinon. That’s it. It really did nothing for my symptoms and I was miserable. My mother was able to find a neurologist who specialized in Myasthenia Gravis. He put me on a more aggressive treatment plan. First, he added prednisone, then biweekly IVIG treatments then added Cellcept. December of 2016 I had a thymectomy (6 months after diagnosis). My doctor has never discussed clinical trial options to me.

Can you describe a day with this condition? What’s the worst about it?

A day with myasthenia gravis is like the cliff hanger at the end of a movie. You never know what you’re going to get but you’re on the edge of your seat anticipating the twists and turns that could potentially happen and when you least expect it, it hits you. I wake up in the morning and just lay there for a few minutes. Hoping that when I get out of bed, I don’t collapse on the floor. I walk to the bathroom and struggle to wash my face and brush my teeth because my arm feels so heavy I avoid looking in the mirror because I don’t want to see the droopy lids. I take my morning meds and then I’m off to my closet where I get frustrated when getting dressed because none of my clothes fit anymore due to the prednisone. I try to eat food but if it is difficult to chew, I opt for the smoothie instead. Or if I’m having trouble swallowing that day I go hungry. I take more meds. If I worked that day I take a nap because I feel so exhausted and tired. Every fibre of my body feels like it weighs a ton. I struggle to make it up the stairs to my room. Sometimes I have to sleep in the den. The worst part about having MG is when I’m having a “good day” and out of nowhere a flare-up happens and I’m shut down for days. I just never know.

What do you wish family and friends of people with MG knew?

I wish family and friends of people with MG knew that this type of fatigue can not be cured with a nap, or yoga, or tea. It’s nothing like the tired normal people feel. Most of the time when we say we’re ok, we’re not. We just say that because it’s easier to suffer alone and we don’t think you can handle the truth. We pretend to be fine but on the inside, we’re really struggling.

How did you decide to start your blog? 

I started my blog Is Was Will Be when I was in the midst of processing my diagnosis and what was going on with me. Writing has always been my expression form of choice. So I began writing to vent about my feelings, then I wrote to help my family and friends understand a little more, then I wrote to educate people on Myasthenia Gravis because it is such a rare disease. Now I write to encourage and inspire those with MG and other chronic illnesses that they can live “ill” lives. 

What are the main questions/concerns/problems that people who reach out to you have? How do you help your followers?

I get the most engagement and interaction from my followers when I post topics relating to the emotional side of living with myasthenia gravis – the loneliness, the depression, the confusion, the anger. I try to be as vulnerable as possible with them to let them know that they are not alone, that I’ve been there too. I also try to offer tips and resources to help move from the negative mindset that often comes with living with MG to a more positive place where they can accept themselves (and this condition) and be happy in spite of their diagnosis.

What do you think about clinical trials being a treatment option?

I’ve never participated in clinical trials but I believe that if I had exhausted all the available treatment options with no success I would have explored them. Clinical trials are a good way to advance medical treatments for all patients with the added bonus of possibly being able to find a treatment that works best for you.

How do you think the collaboration between FindMeCure and Is Was Will Be will help your members?

I’m not sure how many of my followers are looking to participate in clinical trials but I always want to provide them with any information that can help them (just in case they ever need it). I definitely feel as though FindMeCure is a great resource for many with chronic illnesses who are looking for more information on clinical trials but aren’t sure where to go.

If you find yourself having exhausted all available treatment options with little to no success or if you just want to access innovative treatments and help advance medical research at the same time, clinical trials could be a game-changer in your life. Many of them test better alternatives or new ways of incorporating existing treatments and therapies so that you can enjoy a better quality of life with fewer side effects.