The bittersweet knowledge of a dignosis - I have a tumor on my thymus.
Since october-november last year I have had a relapse of the symptoms I have experienced since I was 11yo. Now 22, and all these years just been treated for “atypical asthma” and allergies. My constant fatique from normal days in school, pain and heavyness in my arms and legs and sensitive heavy eyes at the end of the day, now maybe has a diagnosis.
Only reason I even knew to speak up about my symptoms again and mention this to my, not very compasionat, nor beliving doctor, was because of my mothers recent MG diagnosis after having a crisis while travling and a doctor mentioning her drooping eyes. She has had symptoms since 2007 and was finally diagnosed 6 months ago, after being treated for atypical muscular arthritis for all these years (her and I have a joined appointment with a genologist in june.
Now after finally starting the process of diagnosis with my neurologist (who suspects MG), I have had my torso scanned, and I have a tumor on the backside of my thymus. Tomorrow I’m getting a PET-CT scan to find out if its cancerous or not, and I am so emotionally conflicted, confused and scared.
On one hand it is so reliefing to maybe, finally have a fitting diagnosis that can explain and hopefully get a good treatment, and live my life again. On the other, the future seems so scary, even though I have lived with these symptoms for so many years.
If my condition and symptoms continue to be as bad as they are right now, I’ll have a hard time living a normal life, travel, have kids, finish my degree and work a normal 9-5. This is so scary to my, also because I virtually have no social life as of now…
And now to you…
What should I expect? What if it is cancer? And what if it’s not? Have I had this tumor since I was 11 or? Will I have surgery, how will the recovery be and am I cured then or what will the future hold? I honestly don’t know what to expect…
What can I expect and what are your experiences with MG in early 20’s and/or partial thymus removal?
Xxx
(English isn’t my first language - hope it’s readable<3)