Long Journey to the Right Care: Myasthenia Gravis
Diseases
Bone / Muscle Disease, Cancer, Chronic Pain, Ear / Nose / Throat Disease, Endocrine Disease, Gastrointestinal Disease, Genetic Disease, Immune Disease, Migraine, Neurological Disease, Rare Disease, Skin Disease
Issues and Challenges
Janel has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Transportation, Disability, Gaslighting, Invisible Illness, Job Insecurity / Loss, Medical Devices, Power of Attorney, Premium Payments, Social Security Disability, Step-Therapy / Fail First, Underserved Community
My Story
Myasthenia Gravis: A Story of Grit, Grace and Superheros
The prison bars clang shut. The key tumbles in the lock and the final click echoes. It’s lonely. The only other thing I hear is my breath catching in my throat. Just breathe, I tell myself. Fear rattles me, so I question everything I thought I knew. I feel sane but truly lost, alone, isolated; discredited and dismissed. Vulnerability seeps in and settles deep in my bones. I’m on “the inside” now. How can this be my life? Never in a million years would I have believed that I would need to prove myself over and over to those who were meant to defend and protect me, only to be returned to the same prison cell feeling defeated. Something needed to change. With whatever I could muster, some days with a triumphant force and more days with a faltering fist, I began to fight for my life. Literally.
So began my search for a neurologist who knew more about myasthenia gravis (MG) than me. I am not a know-it-all, and I fully recognize that I'm not a doctor, but I am the type of person who delves into information to problem solve. And I had a big problem that needed solving. One doctor said her degree meant more than a Google search. Well, I googled and googled, and am not ashamed or embarrassed because if I hadn’t I am not sure where my health would be today. I researched and became a student of my health watching for patterns and balancing on the edge to be sure it didn’t tip into an unhealthy obsession. I used reputable sources and educated myself. I could not, and still can't, understand why neuromuscular specialists did not recognize my AChR+ lab result and my clinical presentation as being MG. I felt like my integrity and credibility were questioned, and dismissed. And I felt sick. Really sick.
Since 2015, over nearly 10 years, I have seen about 13 neurologists. In fairness, I also show atypical symptoms from another rare condition likely making it a challenge to find easy answers. My other condition makes my muscles work extra hard even while at rest, so when MG symptoms flare so do my other conditions, like a perfect storm. Nay-saying neurologists haven't explored how the two diagnoses might affect one another, but I'm still convinced they do. I am a complicated case, so it makes sense that it would take time to tease everything out. I had no other choice but to be patient and persist.
You’ve likely assumed correctly that I didn’t actually commit a crime. My body is my jail and my jailers, without awareness, forethought, malice or spite, have been neurologists not versed well enough in MG to help, including neurologists vetted by MG organizations and determined to be experts. It took one special doctor who really, truly knows myasthenia gravis who based his diagnosis on a positive lab result, my clinical presentation on and off pyridostigmine, and what I told him. He did not just rely on previous neurologist reports. He listened. I felt heard. I felt hope. My spidey senses were tingling, and if I'd had a crystal ball it would have shown light at the end of the tunnel.
Finding Dr. Allan Weiss in 2021 changed my life. It was by chance that I noticed a Myasthenia Gravis Foundation of America webinar with him and two other doctors on panel where I heard him saying all the things that I had researched about MG, but previous doctors had outright disputed the same information. I realized he was a match for me and booked my flight to Florida. The trip would take a toll on my health and be a significant barrier, yet it was going to be the most efficient way to get my health needs appropriately addressed and it was so much less stressful than seeing someone new and worrying whether they would understand my health needs. He prescribed the correct dosing of pyridostigmine and started IVIg, and a year later I was finally strong enough to have a thymectomy. IVIg was fairly effective but the side effects were difficult, my veins became difficult to work with and eventually it stopped helping. I am currently still taking pyridostigmine, and am ecstatic to say that I started Vyvgart four months ago. I’ve learned to keep expectations low and my hopes high, but having said that, I am so happy and hopeful with how I am responding to this new treatment. I still have bad days, and perhaps I always will, but I feel the best I have since MG arrested my life. I'm ecstatic! I recently went camping for the first time in over 10 years and walked about 30 feet from the trailhead to prove I could “hike’ again Baby steps! I am walking my dog once or twice a day and am able to shower and do my hair and make up more consistently. I'm taking care of my home more. It's the small things that matter, and I try to celebrate especially the small things. They actually don’t feel all that small though. Small is relative, so the ruler adjusts depending on the day. Every single thing Dr. Weiss has done has helped me, albeit more gradually than I’d like, but progress is progress and it was the tortoise who won the race, afterall.
Silly me, I’ve always been the hare, but I’ve been consciously channeling my inner turtle for years now thanks to MG. That's true gratitude, not sass. I worked a very hectic job. It was a lot of hours. It was my life and I loved the mission, so I never would've stopped to "smell the roses", as they say. Leaning into this new life takes practice. I know absolute acceptance does not exist, but that is just fine because perfection is an illusion and highly overrated. MG is always there, familiar now like an old friend whom I've come to expect and who keeps me company. It’s also like a hated enemy. There are still times when I deeply miss being able to do what I used to. It’s okay though. I'm okay. I know it's part of grieving the loss of my previous life. Plus, I have had years to process this which helps. We all need to give ourselves a little grace on this ride. MG is a great teacher of patience whether we are willing students or not. Living with MG takes an immense amount of grit and grace.
My Floridian doctor is a real life superhero. Traveling there from Maine is a significant physical and financial hardship. Having improved so greatly under Dr. Weiss’s care, I hoped my MG diagnosis would be more evident now to other MG specialists who are closer to home, and they would be able to take over my current, very effective treatment. So, I began another quest for a doctor in New England. I just saw neurologist #13. At this point, I think I have PTSD when it comes to seeing neurologists. I, yet again, left feeling deflated. He said if I became his patient he would take me off all treatments to get a baseline and I would also need to participate in their Functional Neurology Clinic. He recommended I stay with Dr. Weiss despite the adversity it causes. That lost feeling crept back in. It is simply too scary to stop the treatment that has finally sprung me from solitary confinement. I remember what it feels like not being able to breathe, to be so weak that I collapse, to not be able to speak or swallow normally, to not being able to leave the house or my bed, to need others for almost all of my needs and so many other things that have been terrifying. I never, ever want to go back to that. My appreciation for Dr. Weiss grew stronger, and I have accepted that I will need to manage these barriers somehow. Dr. Weiss is worth it. If only we could clone him!
I am not alone. I speak for so many others across the country who feel dismissed. Some actually stop seeking help because a doctor tells them everything is normal. We know our bodies and are experts on what we are experiencing. This is not a stab at physicians. They are human, and many with rare diseases have other conditions that muddy the diagnostic waters. Fortunately, my career of over twenty years was devoted to advocating for others. Advocating for oneself, however, is not as easy, especially when feeling so weak and exhausted along with the myriad of other symptoms. It truly is a full time job. To anyone who needs to hear it, you can and will endure this. It will be the slowest, scariest roller coaster ride ever, so hang on for the highs and the lows and don’t expect to know up from down. Some true but cliche advice: Advocate for yourself because if you don’t, then who will? Educate yourself since it develops self-confidence and strengthens your ability to advocate. Don’t expect it to be easy, but know that you are stronger than you think. Ask for help. Remember that you are not alone and there is an MG Friend program, support groups and a hotline ready to help. Know that doing your best is good enough, and good enough is all that's ever needed. Some days that may mean staying in bed only to get up to use the bathroom, and that’s okay. Rest, and get back to the race when you've recharged. Forget about the hare in the race, just "turtle on” until you find your own superhero doctor. The bigger ask is to not expect people living with MG to expend the energy and resources it takes to seek superhero doctors and to rally themselves to research and advocate, but instead to have more superhero doctors to choose from, but that topic is for another time.
I was “released” after Dr. Weiss finally came on the case in 2021. I am permanently on parole with lifelong check-ins, but there is relief and reassurance knowing someone is in my corner who genuinely cares. His continuous curiosity about the disease, always willing to learn and engage with colleagues and top-notch care for his patients is commendable. I am not sure what drew him to specializing in MG, but thank you for it, Dr. Weiss! You are a perfect example that not all superheroes wear capes.
My Motivation and Inspiration
I'm motivated to share my story in hopes to inspire others to not give up or take no as an answer. Take heart.
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