Dr. Vickie about Myasthenia Gravis: “When you push MG, it pushes back.”

Hello, Dr. Vickie Petz Kasper! Thank you so much for agreeing to share your story with us. 

First of all, could you tell us more about yourself (your background, your work, your hobbies and interests…)? 

I practiced ob/gyn for 20 years and delivered over 5,000 babies. As an avid road cyclist, I pedaled my bicycle about 100 miles a week. At the age of 50 I was more physically fit than ever.  

Could you describe your condition, myasthenia gravis? When and how did you first notice the symptoms, and what prompted you to seek a diagnosis? 

For a while, I noticed my right eyebrow was elevated, especially when I was tired. And I was tired a lot because babies come at all hours of the day and night. New moms often want to take their doctor’s picture with their newborn. My eyebrow looked so wonky. I had double vision too, but I didn’t realize I was always closing one eye to correct it. Then my eyelids got so droopy I couldn’t hold my eyes open. I was diagnosed with ocular myasthenia gravis and six weeks later, it generalized to the rest of my body. Over the preceding weeks, I was getting worse and ignoring the weakness because I had a 250 mile bicycle ride planned and I really wanted to go. When you push MG, it pushes back. During a C-section, I could no longer use my hands.  

How has your condition affected your daily life and routine? What kind of physical and emotional challenges has living with this condition presented for you? Can you share any specific triggers or factors that worsen your symptoms? 

The first year was the worst and that’s typical with MG. My activity consisted of lots of rest and I could only walk a few feet, and then only if I wore lightweight shoes. My arms were affected too and got fatigued after ten minutes of driving. Even opening the mail was a challenge. If I kept my arms down, I could use my hands, so I started blogging. Writing was therapy for me.  

Stress, heat and humidity magnified my symptoms. Unfortunately, where I live the summers are hot and sticky. My 30 year marriage ended, so stress was intense.  

Can you describe your current treatment and its effectiveness in managing your myasthenia gravis symptoms? 

Currently, I am in remission except for my eyes. Of course, I still have to be careful and not overdo it with exercise or I feel weakness in my shoulders. 

I was very aggressive at getting treatment because I wanted to return to my active lifestyle. At first, I took a high dose of pyridostigmine, as well as a long-acting form. They prescribed Azathioprine, but I couldn’t take it because it made my liver enzymes elevated. Instead they put me on the immunosuppressant Mycophenolate. It caused nausea, but I tolerated it ok. The worst thing was taking a high dose of prednisone. My face grew to a full moon and I developed steroid-induced diabetes. If I thought getting on prednisone was hard, getting off was harder.  

Early on I had a robotic thymectomy even though my MG is seronegative. I believe it made a difference since I’m doing so well now. They tried plasmapheresis, but it only helped me for a short period of time. Everyone responds to treatment differently. Finally they started me on IVIG and I did infusions every three weeks for 5 years. I felt like I got my life back. After that I switched to subQ IG which was really convenient because I could do the infusions at home every week. 

Has your perspective on life and your priorities changed since being diagnosed, and how do you stay positive and maintain your emotional well-being while living with this condition?  

My faith is the foundation that keeps me focused. The MG community was a source of inspiration and we connected online. It’s so helpful to interact with people who understand the frustrations of this disease, especially when I was so weak I couldn’t do much else. My family and friends were also a huge source of support.  

I don’t take anything for granted, not even the ability to walk. 

What inspired you to start your own blog and what do you write about? Was there a specific moment or realization that prompted this decision? 

My story of developing MG in the operating room is pretty dramatic. I knew I wanted to write a book about it. Nine years later, I’m still working on getting it published. But I did write a short book on forgiveness.  

My blog was originally called, “My Right Side Up Life.” When I was first diagnosed, my pastor wrote me a note and said, “I know your life has been turned upside down.” Immediately, I thought that really in many ways, my life had been turned right side up.  

I write about maintaining Christian faith in the face of adversity to encourage others who are struggling.

What are some misconceptions or common misunderstandings that you've encountered regarding myasthenia gravis, and how would you like to address them? 

What you see is not what people with MG get. It’s an invisible illness and the symptoms fluctuate greatly. So you might see someone with MG who looks perfectly normal one minute and the next they are so weak they can’t do anything. But you can’t see weakness. It’s such a frustrating disease! 

How has the support of friends and family been crucial in your journey with myasthenia gravis, and do you have any advice for others on how to best support loved ones dealing with similar challenges? 

Family and friends were so supportive. That first couple of years when I was too weak to care for myself, they did everything for me. I probably said, “Thank you,” a million times. It was the attention to my everyday needs that meant the most to me. I had a neighbor volunteer to help me pack for a trip, a friend who peeled my shrimp at a party, another friend who picked up when I needed a ride and my nurse practitioner took me to the hospital for my treatments. 

If you know someone with MG, don’t assume they are feeling ok just because they aren’t home in bed. Anticipate their fatigue and jump in to help. Most of us don’t like to ask, but any repetitive movement drains our strength.  

What are your hopes and aspirations for the future, both in terms of your personal life and the myasthenia gravis community as a whole? 

The MG community is awesome. The vulnerability with our struggles to do everyday things creates a tight bond. I remember being incredibly inspired by those who were able to return to some level of normalcy. Now that I’m in remission (mostly), I hope others have hope. Fortunately, there are lots of new treatments too. 

And, I would still like to get that book published! 

I am currently studying for my board certification in Lifestyle Medicine and launching a new podcast in January called, “Healthy Looks Great on You”. In late spring, I hope to start a telehealth medical practice in this field.  

I’ve let my writing lapse a little because I’ve had too many irons in the fire, but I plan to jump back in after the podcast launch. I want to encourage others to live in community, nurture their faith and adopt a healthy lifestyle. It’s all intertwined.  

Do you have any final words of advice you'd like to share with others with myasthenia gravis who are facing similar challenges? 

Be your own advocate and never settle if your treatment is not effective. Don’t accept that this is your new normal and keep pushing for treatment if possible.  

Focusing on yourself and your struggles only magnifies them. Though you may be limited, look for ways you can help others. But don’t be afraid to ask for help. That’s actually a blessing for others. Keep the faith and never give up.  

A big thank you to Dr. Vickie Petz Kasper for this interview!

Feel free to listen to her podcast : Healthy Looks Great on You

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