After contracting Covid in March 2020 as a frontline worker, I never recovered fully. My main complaints were persistent cough, shortness of breath, wheeze, reduced exercise tolerance and constant mild elevated temperatures. However looking back, I was unwell since 2014 with recurrent “minor” infections like UTI’s, chest infections and Sinusitis. My health got progressively worse since 2017, when I actually noticed red flags like cough, wheeze, not putting weight on, being tired all the time.
My GP was amazing. He did all the tests required at that time, but they all came back normal.
January 2021 I received my first Covid vaccine. Shortly after I got very unwell with double vision, difficulties holding my neck, nausea and horrible pain around one eye. As a doctor myself I thought about MS immediately, a brain tumour or Myasthenia. I was sent home several times from A&E with a “visual migraine “. No one wanted to do a CT scan, MR scan or refer me to Neurology. I presented myself again, but this time I had obvious ptosis of one eye. This was the day I got referred for further investigations. I had chest x rays done, which were all normal. Many other blood tests, which confirmed the diagnosis of Myasthenia gravis. Few weeks later I was admitted to HDU with a near crisis. At that point I demanded a CT Thorax. Back and forth and after many discussions and arguments, I received my CT scan, which unfortunately showed a thymic mass. I was told “inoperable” and at least stage 3.
The Thymoma was wrapped around the aorta, innominate vein and other important structures. I didn’t want to give up and I didn’t want my kids losing their Mum at such a young age. After talking to the Cardiothoracic surgeon, I received more scans and ended up having a biopsy.
The biopsy showed Type B3, which is the more aggressive form. In May 2021, exactly 1 year ago I was successfully operated and received adjuvant radiotherapy. I was and am still fighting against two rare diseases.