Myasthenia Gravis Patient Perspective: Our Clinical Trial Manager Thomas Grønnebæk caught up with Ulrik
Ulrik, 61 yr. working as IT consultant in a Danish Bank
When did you first start experiencing symptoms of Myasthenia Gravis?
The first time I experienced symptoms of Myasthenia Gravis was in 2019. I was driving my car and suddenly noticed that the cars driving 500 meters ahead of me appeared double. I contacted my doctor who told me that the double vision was most likely caused by inflammation and that it would disappear again which it did. However, in May 2021 the double vision reappeared. This time the double vision was no longer just confined to objects in the distance, and it became so bad that I was not able to drive anymore. I contacted my doctor again and he referred me to an eye specialist. In the meantime, my daughter who is also a doctor noticed that my face had become asymmetrical – I was immediately referred to a private neurologist. I was assessed for cerebral hemorrhage and thrombosis and scanned to check for brain tumors; tests which all came back negative. I then went to an eye specialist, and he suspected that it might be Myasthenia and referred me to a neurologist for further assessment and antibody testing. I was finally diagnosed with Myasthenia Gravis.
What treatment have you received since your diagnosis?
After receiving my diagnosis, my neurologist prescribed Pyridostigmine. This had a very positive effect on my double vision, and I have not had any side effects since. I do not currently receive any other treatments for my Myasthenia Gravis.
Which symptom(s) is most troubling for you?
Fortunately, I do not have very severe symptoms and Pyridostigmine works very well to alleviate my double vision. However, I do get very tired in the evenings and that impacts my ability to participate in social activities and therefore also quality of life. However, I can continue working and that is very important to me.
How has the Myasthenia Gravis community supported you and your family?
I am active in a Myasthenia Gravis Facebook group. It’s a really great place to learn from other people with Myasthenia Gravis and to discuss practical questions related to the condition.
What would be your advice for other individuals and their families who have just been diagnosed with Myasthenia Gravis?
I had a very long and cumbersome diagnosis. Being stubborn and insistent helped me through the system. I would recommend joining a Myasthenia Gravis Facebook group. I would have very much appreciated if my doctors or someone else had referred me to this Facebook group or the Danish Patient Organization for Neuromuscular Diseases, Muskelsvindsfonden.
What more can be done to raise awareness of Myasthenia Gravis?
I am not sure what more can be done to increase awareness, and even if more public awareness is needed. It might be because I have mild symptoms, but I do not necessarily think that low public awareness is a problem, at least not for me. I do think that more awareness is needed in the healthcare system to ease the path to diagnosis and treatment.