We’re back with another Pass The Mic Interview. This time we have Jessica P who has graciously shared her myasthenia gravis journey with us. Check out her interview below.
Name, Age, City & State
Jessica P. , 40, Roanoke, VA
How old were you when you were diagnosed with myasthenia gravis? What events led up to the diagnosis?
In April of 2016, before my diagnosis, I had thyroid cancer, a thyroidectomy and radioactive iodine. I firmly believe that those treatments started the process of the MG surfacing.
I first noticed an eye droop in April of 2017. It progressively got worse and my PCP referred me to a ophthalmologist. He then referred me to a neurologist. I saw my first neurologist in September and he suspected MG immediately and put me on Mestinon while waiting for blood work to come back. The mestinon helped immediately and the ACHR test was negative, so he sent me for a SFEMG which was positive. By that point I had generalized weakness in my limbs and blurry vision. That was in November. By December I was having breathing issues and trouble swallowing. He then did the MUSK test which was also negative and set me up for IVIG.
What has your treatment plan been? Which medications have you had the most success with?
Mestinon worked well for me at first. It would last 4-6 hours and take away almost all symptoms. In the past few weeks it’s only been lasting 2-3 hours so my neuro had me increase form 60mg to 90mg every four hours..
I have switched neurologists now, but my first neurologist had me do IVIG in January and then put me on a high dose of prednisone (60mg). I immediately felt worse and the next week saw my new neurologist who took me off the prednisone. I don’t think the IVIG helped at all. My new neurologist ordered Rituxan, but that was denied by my insurance this week so I’m waiting for an appeal.
Are you in remission? If so how long?
Besides the symptoms, what’s the most difficult part of having myasthenia gravis for you?
Trying to continue working and being a mom to four boys. I teach full time at a high school so I barely make it through the school day. When I get home I literally collapse on the couch for hours. Some nights I start to feel better after a few hours and can participate in life a little bit, but I’m often couch-bound the rest of the night.
What’s the biggest impact MG has had on your life? Have you had to make any changes to your everyday life?
I am no longer able to do the things that I enjoy. I avoid shopping because the walking around exhausts me. I limit the activities I do with my kids because leaving the house and doing things wipes me out for the rest of the day. I also feel like I’m not able to do my job well anymore. I have to sit the majority of the class when I am teaching and talking for long periods of time is not an option. I also slur my words a lot and I teach Spanish, so it affects my ability to do my job in that way as well.
Who or what has helped you the most in coping with your diagnosis?
My husband takes on a lot of the responsibility at home. When he is off he does a lot of the cooking. When I feel bad the only way to improve is to sit down and rest. Mestinon takes the edge off, but only rest lets me recuperate.
What goals have you been able to accomplish in spite of your myasthenia gravis diagnosis? What’s next for you? Aspirations/Goals etc
I have been so bogged down in getting a diagnosis and trying to get the treatment that I need that I haven’t even had any goals on my radar.
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed with MG?
Educate yourself! A lot of doctors do not know how to treat MG and patients are being sent home in emergent states and being told it’s an anxiety attack or all in their heads. Also, join a support group. I use one on facebook because I don’t have time for an in person group. That is where I have learned most of my information. You need to know what is normal and what the doctors should be doing so that you can advocate for yourself.
Any other comments or words of wisdom you want to share?
This is a forever disorder until a cure is found. It’s a marathon not a sprint. Be patient with yourself and advocate for yourself. Learn to say no to the stuff that doesn’t matter and rest your body so that you can do the things that do matter.
Thanks so much again Jessica for sharing your journey with us. If you’d like to connect with Jessica you can reach out to her via Facebook (Jessica Langway Phillips).