June is Myasthenia Gravis Awareness Month. If you have never heard of MG, you are not alone! We reached out to Friend in the Fight Katie McCurdy to shed some light on this autoimmune condition that affects tens of thousands of Americans.
Katie McCurdy is an autoimmune patient, designer, and founder of Pictal Health, a company helping patients tell their health stories visually. Learn more at katiemccurdy.com and pictalhealth.com.
diagnosis
When I was 13, I was sitting at dinner with my family and my mom said, “why are you laughing like that?” I ran to look in the mirror and was met with a strange, snarling expression instead of my usual laughing face.
The symptoms came on that quickly. Perhaps it wasn’t overnight, but it was very fast. Sudden facial weakness meant I was having trouble smiling and playing the clarinet, and my arms tired while washing or brushing my hair. My eyes felt droopy and I had double vision while looking to the right. I felt fatigued all the time.
I was incredibly lucky that my pediatrician immediately suspected Myasthenia Gravis, a neuromuscular autoimmune that causes weakness. She referred me to a local neurologist who confirmed the diagnosis within weeks of my first symptoms.
symptoms
Myasthenic weakness is caused by a breakdown in the nerve synapse. But what that weakness looks like can be different from person to person; they call MG the ‘snowflake’ disease because it affects everyone differently.
There are common sub-conditions: Ocular MG, which affects just the eyes and causes double vision and eye drooping, and Generalized MG which causes more widespread weakness. Many people with generalized MG have weakness in their limbs that makes it difficult to stand, walk, and lift their arms above their head. As someone’s symptoms worsen during a flare, they may have trouble talking, chewing, swallowing, and even breathing – this is called a myasthenia crisis and can potentially be deadly.
I am lucky that my symptoms have not affected my limbs too much, and I have also never had a breathing crisis. But my facial weakness – the inability to smile or make normal facial expressions – affected me mentally and emotionally for 25 years. I would avoid talking to people in public if I wasn’t having a strong face day. I would worry that my smile/snarl would come across as sarcastic or just plain weird.
diagnostic delays
Many people face years of symptoms before finally getting their diagnosis (the average time to get an autoimmune diagnosis is about 4.5 years). I am grateful my path was so short and efficient.
I have personally known people who have been through horrible, demoralizing diagnostic journeys on their way to an MG diagnosis. A family friend, a man in his 70s, went through multiple eye surgeries that attempted to ‘fix’ his newly droopy eye; but since the eye was drooping due to MG muscle weakness, these surgeries were ineffective and frankly totally inappropriate – his ophthalmologist should have known that MG could be the cause of a droopy eye.
Another friend has faced extreme medical gaslighting because she is one of the 10% of MG patients who do not have detectable biomarkers that could lead straight to a diagnosis – and she happens to have a mental health history. She has been told over and over that her symptoms are in her head, as she struggled to walk, stand, hold her head up, chew, swallow, and even breathe – classic and dangerous symptoms of runaway MG.
treatments
Fortunately, there are a few different treatments for MG patients. I’m not an expert in all of them, but I’ve taken a medication called Mestinon for 30 years; I’ve also taken the corticosteroid Prednisone for 25 years. (My doctors are not happy about this, as Prednisone leads to osteoporosis and other side effects, but my body has become dependent on it so I continue to take a low dose daily.) Prednisone is one of many immunosuppressants, drugs that reduce the immune system’s activity and therefore reduce autoimmune symptoms. I take another immunosuppressant called Cellcept, which was originally used in organ transplant patients.
Even with these three drugs, my symptoms were still noticeable and interfered with my daily life. Finally, in 2017 I started IVIG – IV Immunoglobulin infusions. Within a few days, my MG symptoms were simply gone. I had a strong smile for the first time in 25 years. My voice strength came back, and my eyes felt more ‘open.’ I felt more alert. I could fully participate in yoga classes, and my arms and legs quickly became stronger. Now I get home infusions (administered by my awesome home infusion nurse Amy) two days per month, for five hours each day.
Finding a treatment that works has been life-changing. I’ve had more strength and energy at work, and finally don’t have to worry my voice will give out when I’m giving presentations. My inner extrovert has finally been released: I am happy to stop and talk to any friend or acquaintance at any time!
So life is drastically improved for me (though I still deal with rolling symptoms from my other autoimmune condition, Sjogren’s Syndrome, and allergic symptoms resulting from Mast Cell Activation Syndrome.)
IVIG has worked for me, but it doesn’t help everyone. Many people continue to try different treatments without fully resolving their symptoms. Right now, there are some new MG drugs being released – I feel hopeful that patients like me will have lots of options and that more folks will find something that works for them.
community
I haven’t really been an active part of any MG communities. Since I got MG when I was 13, and the condition mostly affects older people, it was hard for me to identify with others at the MG support groups I attended. I did travel to Miami one year to attend the Myasthenia Gravis Foundation of America’s annual conference, and I met lots of other young people there; the experience was really important to me and helped underscore just how different each person’s symptoms are.
tips for other MG patients
Find a doctor who listens and who understands MG. My neurologist, Michael Hehir at the University of Vermont Medical Center, always makes time to answer my questions and is up-to-date on best practices and treatment options for MG. It’s a huge relief to know I have a doctor I can count on.
My first neurologist gave me a tip that I’ve used many times: If you’re having double vision due to MG, wear an eyepatch or put a piece of scotch tape over one lens of a pair of glasses. This effectively limits your vision to one eye and makes it easier to get through your day.
Watch out for magnesium. This supplement can be helpful for many, but it can also flare MG symptoms. I’ve re-learned this recently.
Stress and lack of sleep are big symptom triggers for me, and I suspect they are for others. Stress management is one of the best things we can do for ourselves.
It’s worth playing with dietary changes to see if this helps your symptoms. I have found that my autoimmune symptoms calm down when I avoid foods that have dairy and gluten. But each person’s food triggers are different.
And of course, be kind to yourself and meet yourself where you are! With autoimmune conditions, we don’t know what each day will bring.