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From MG to MD: a story of hope and persistence

From MG to MD: a story of hope and persistence

By Kate Stober

In this blog post, a second-year UC San Francisco medical student with myasthenia gravis shares his story of diagnosis at a young age and how MG inspired him to pursue a career in thoracic surgery. His name is confidential at his request.

 

I was born and raised in the San Francisco Bay Area of California. In high school, I already knew that I wanted to pursue some kind of career in research… physics, biology, chemistry... I was always into the sciences. I was fortunate to be accepted into a research-heavy institution in New York for college and was planning to move out for my freshman year.

 

But right before college, I was diagnosed with MG. I actually had symptoms during high school - the classic double vision. I just sort of ignored it - I thought it was fatigue from school stress.

 

Then in July, the month before moving to New York, I started having weakness in my facial muscles. Chewing and swallowing became difficult. I went to the neurologist, and, luckily, I was diagnosed right then and there. I know a lot of people in the MG community whose diagnosis is missed multiple times, but I am grateful to my neurologist for diagnosing me quickly.

 

I started treatment with mestinon and prednisone. (I have seronegative MG.) Mestinon helped a little, but the prednisone was much more powerful. I know a lot of people who have had a similar experience as mine: prednisone-related side effects -- I was more stressed out, more anxious. It also really affected my sleep. I asked my neurologist to see what other options were available. I continued on the prednisone, but he was open to decreasing the dose. That didn’t help with the side effects, but it did control my disease really well.

 

In being diagnosed with a completely new disease and having had to deal with the numerous side effects from medicine, the first two months of college in New York were really difficult. I was away from family and friends, and it was a completely new culture and atmosphere. It was a stressful experience, but I knew I just had to trudge on -- continue on with my life and my time in college. I was lucky that my neurologist from California worked with me through the different treatment options. As long as I took my meds, I was doing okay in terms of symptoms. That felt like a big victory at the time.

 

Starting IVIG treatment

In the third month of my first year, I started having weakness in my fingers and hands to the point that typing was difficult. I remember I was typing an essay for a class and my fingers just wouldn’t move any more. I called my neurologist, and he told me to urgently make my way to the Emergency Department for treatment. This was four nights before my midterm exam on organic chemistry. They gave me an intravenous immune globulin (IVIG) bolus, and I stayed the night at the hospital. I vividly remember having my chemistry textbook open in front of me while getting this treatment. (All this studying was not wasted, however; I passed my exam!)

 

My symptoms did improve drastically, but the next day I got a massive headache. This pattern repeated itself every four weeks after that. I got the treatment at the hospital, then got this headache. The side effects of the treatment for MG were more severe than the MG itself.

 

Amazingly -- and I take pride in this -- I was still able to conquer my school work. It took a lot of planning, a lot of emailing professors, “I have this condition; if you can help me manage through, that’d be great.” I was also fortunate to have a good family and friend support system. At first my parents couldn’t quite believe the diagnosis, but they slowly accepted it and were really supportive after that. My mom would keep track of my medicines and would call me every morning to make sure I took prednisone at the right time.

 

The first six months after you’re diagnosed takes some adjustment. Then I sort of fell into a routine. I knew my trigger points, what to avoid, how many hours of sleep I needed. My MG got better… I just adjusted to it as a part of my life.

 

Next phase of treatment - a thymectomy

The summer after my freshman year, I had a thymectomy using minimally invasive, endoscopic techniques. Fortunately, I didn’t have that many complications because I’m relatively young for this disease. I am forever grateful for the healthcare team and was able to recover well from the surgery.

 

For people who obtain a thymectomy, the benefits (if any) don’t show until a few years down the line. Some patients improve, some don’t. This uncertainty did not really bother me; instead it transformed itself into hope for me. I just had to wait and see. In the meantime, I still continued the IVIG. I had eventually learned to manage the disease.

 

About two years after my surgery, my neurologist made a bold move to stop the IVIG and see what happened. Nothing terrible happened, although I would get some MG-related fatigue now and then. My symptoms were starting to stabilize.

 

By the end of college, I had stopped prednisone completely, and I’ve been pretty stable since then. I’m off meds now and, knock on wood, I stay like this. I think the thymectomy worked.

 

Pursuing a career in healthcare

Seeing the impact the medical field has made on me, inspired me to pursue medicine. The entire healthcare team… nurses, neurologist, PTs… collectively work together as a team. I wanted to be a part of that team in improving people’s lives.

 

I also am super amazed by the treatment plans available when it comes to current remedies for autoimmune diseases. Right now, I have one or two small scars in my chest that are barely even noticeable—symbols of my triumph over the disease. I am still amazed at how the surgeons managed to squeeze the entire thymus gland out of those small incisions.

 

My dream to study medicine eventually came true: Currently, I am a second-year medical student at UCSF, and I cannot emphasize how much my friends’ and family’s support were essential throughout this journey.

 

Every day I waver on what I want to do post-med school, but I keep going back to pursuing thoracic surgery. I think I’m probably meant to. Eventually, I want to do a balance of research and patient care, with an emphasis on the latter.

 

The power of MG support groups and activities

In New York, I was part of a support group in Manhattan led by Susan Klinger. She was the absolute best, inspiring us all and giving us advice on how to manage the condition. I really wanted to support the group in every way I could. I shared my story and listened to and engaged with others in the support group. Everyone has a lesson learned that they want to share. In a way, the support group gave us a “third space” away from home and work to talk freely about how we’ve been impacted by this condition.

 

I attended an MG walk in Brooklyn, too, and I was so inspired by the mindset of all the folks with MG. If all of these people with MG can walk long distances, why can’t I do it? That sort of pushed me to engage in fitness and become a fitness trainer, which has become one of my favorite hobbies. If it wasn’t for MG, I never would have gone into fitness, so in a way MG has actually improved my cardiovascular health!

 

For the future, I’m thinking of starting a local support group as well as a fitness support group for patients with MG. My goal is to use my fitness certification to educate patients with MG on how to exercise while living with this condition.

 

Advice to other patients with MG

Don’t let this disease limit you in any way! Everything is open to you still. If you want to play piano, play piano. If you want to go swim, go swim. It actually will help you in the long run. Of course, we have a new equilibrium, in terms of at what point you call it “done.” Don’t push yourself to be exhausted but go do what you enjoy the most. Relax. Take ample rests as needed. But most importantly, pursue whatever passion you want.

 

My second piece of advice would be to work closely with your neurologist. Be as educated as you can about the condition. The more educated you are, the more you’re aware of different treatments. Always get a second or even third opinion, and don’t be afraid to speak up if treatments are not going well or they are interfering with your daily life! There are a plethora of treatments for MG, fortunately, and something’s bound to work for you.

 

For the newly diagnosed, my last piece of advice is that the first year post-diagnosis is the hardest. Push through the first year and don’t let this disease define who you are. The good days are yet to come!

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