Myasthenia Gravis… Thymoma & The Journey Ahead

Hello, My name is Katrina Tokar. I’ve recently been diagnosed with a chronic rare autoimmune neuromuscular disease. I was medically dismissed from my job in January this year 2023. My right hand started to seize along with muscle weakness throughout my body which affected my daily tasks. I was in and out of the hospital emergencies for 3 months while my symptoms continued to progress. This left me in severe panic, depression, and frustration as I knew my body was shutting down. Myasthenia Gravis is very tricky to detect as there are many different tests to confirm diagnosis. In February my right eye started to droop, I was extremely fatigue, and my limbs started weakening. My neurology appointment was scheduled for May. By the end of March my left eye now became very droopy, my voice changed, I had occasional slurred speech, my jaw weakened making it difficult to chew. These symptoms would come and go depending on the day and my activity.

April. 17th, 2023 I was admitted into emergency with difficulty swallowing, shallow breathing, slurred speech, with weak facial muscles and limbs. I told the doctors I think I have “Myasthenia Gravis.” Through the months of researching my symptoms online, this disease was top of the list for all the check marks. The doctor told me he wouldn’t discharge me until they had a confirmed diagnosis. It was a struggle getting me a bed that day, as the medical team did an excellent job under the pressure they were dealing with all around. The hospital neurologist met with me the next morning, I had CT scans, multiple blood tests, along with an Electromyography (EMG) nerve test days later. I spent 5 days in the isolation unit waiting on confirmation. Sure enough I was right! All medical team were impressed with my personal diagnosis. It was taken to further action mentioning my concerns as my symptoms were repetitive and advancing. My body is now responding to the medication, I can swallow, breathe, and "talk" (believe it or not LOL), yet I have a lifetime of battle ahead.

Unfortunately, I am also the 10% of the rare people whom have Thymoma (tumour on my thymus) which is aggravating the illness. Tuesday May 23rd my wonderful Thoracic surgeon will be removing the cancer along with my Thymus gland. I am so thankful to have a wonderful medical team of professionals in Toronto whom have been giving me special care. I cannot express the gratitude I have from the support of my wonderful Mother, my partner Khristopher, & friends on my side this whole time and doing their best to keep positive. I must breathe, relax, and take care of my immune system and make sure I don’t enter another crisis state for hospitalization. I hope to have more time and energy to continue working on creative projects, however finances are tight trying to pay bills. It could take many months to receive disability which will still be tough to get ahead. Any help possible to ease the financial worry and stress while concentrating on fighting this illness would be appreciated. Positive strength and vibes sent my way is more than enough as it’s tough times for all and not expected. There is no cure for Myasthenia Gravis, yet there is a road of treament to help me stay alive. I am strong and will keep myself going as this disease is liveable yet challenging. I feel my story is worth sharing and never to ignore your body and always trust yourself to act upon it. Because sometimes, “Mr. Dr. Google” can be a lifesaver!! Thank you for hearing my story. XO KAT