By Krystel El Koussa, as told to Stacey Jones
It was complicated to get my myasthenia gravis diagnosis. I got diagnosed late 2022.
I'm originally from Lebanon. I have a bachelor of arts in cinema and television. I moved to Montreal in early 2021. I have been working as a production coordinator in movies for over 3 years.
Around August 2022, I started feeling extreme weakness in my upper body – my arms and my fingers, especially. I couldn't tie my hair correctly. I couldn't put on my bra and other small things that people usually do every day with no difficulty. And on top of that, I was a new immigrant here and I didn't have a family doctor.
Navigating a Health Care Maze
I went to the first doctor and they ordered blood tests, which came back completely normal. They told me it must be stress. And at the time I was job-hunting. I was also moving to a new apartment, so it was a stressful period.
A few weeks later, I started feeling weakness in my lower body, too. My legs were really weak. One day, I was rushing to get on the metro (subway train), and everybody got in, but I fell. I didn't know what was happening and I tried getting up on my own. I had to just wait for my muscles to relax to be able to get up.
I tried to book another appointment online. It was almost an hour and 15 minutes away from me, and it had started snowing. But I really needed to see a doctor. After the examination and tests, he said it's probably nothing – everything looks totally fine. I kept telling him I feel something is wrong. I really know my body. I’d never felt this tired. And I never used to fall out of nowhere. Before I went to see the doctor, I had fallen four times in 2 days. So, he said, just to be sure, I'm going to refer you to a neurologist and I'm going to order a brainMRI and a full spine MRI.
Advocating for Myself
Day after day, I started getting worse. My left eye began closing by itself. It didn’t occur to me that the eyelid is a muscle. The first time I went to the ER was on Nov. 28, 2022. I spent more than 12 hours there.
What's weird about this disease – and really kind of annoying – is that when you relax all your muscles and don't talk, don't eat, don't really walk or use any of your muscles, your symptoms can kind of vanish. So, by the time I saw the doctor in the ER that night, my symptoms weren’t visible anymore. He just looked at me and saw a completely normal person. I explained everything that was happening with me. I told him I had my referral to the neurologist, but my symptoms are getting worse day by day and I don't even know when they will call. I told him I urgently need to be seen by a doctor, by a neurologist specifically.
We did a lot of tests in the ER that night. The ER doctor told me that everything looks fine and, unfortunately, you're going to have to wait to see the neurologist. I was really frustrated. I told him I had waited a long time, and I can't wait anymore. Every day I woke up with a new symptom.
Finally, a Diagnosis
Eventually, my left eye stopped opening at all. I ended up taking an emergency appointment at a third general practitioner on a Sunday. When he saw me, he knew that I urgently needed to be seen by a neurologist. He checked the previous referral that the other practitioner gave me for the neurologist, and it said 3-6 months. So that's why I was waiting, waiting, waiting, and the call never came.
This doctor told me that unfortunately, the only way to get immediate medical attention was to go back to the ER. I told him that I really can't do that because they didn't help me at all. He said, I'm going to write a letter for the ER doctor, and when they see this letter, they will urgently let you see a neurologist.
He gave me the letter and told me to go straight away to the ER. That was Dec. 4. No one could have denied that something was wrong with me that day. There was no neurologist working overnight, so that ER doctor gave me a referral for early the next day.
The next day, I went to the ER with a friend who knew about most of my symptoms and knew what to explain to the doctors if my speech just stopped. When I arrived, there was a whole team of neurologists – I think three or five doctors – waiting for me. They told me with almost 90% certainty that I had myasthenia gravis. We did further tests that would later confirm this diagnosis. They explained what the treatment would be and told me I would need to stay in the hospital for at least 5 days to give me the intravenous immunoglobulin (IVIg) treatment at first, an emergency therapy for MG .
They explained that they wanted to keep me in the hospital because I was having a crisis. I couldn't speak. I couldn't swallow. I wasn't eating. I was at risk of choking, too. What if my breathing stopped and I needed assistance? They moved me directly to the ICU and started my IVIg treatment.
Dealing With Unexpected Challenges
As a precaution, everyone diagnosed with myasthenia gravis also gets a chest CT scan, because 10% to 15% of people with MG may also have a thymus gland tumor called a thymoma in their chest. That tumor could also make the symptoms get worse. Unfortunately, when they did the CT scan on me, I had a tumor. It was pretty big, and it was pushing on my heart. I stayed almost a month in the ICU because I was not getting better. The doctors decided they should operate. We had to do an open-chest surgery because that was the safest way to remove the whole tumor.
The diagnosis was really shocking. It was such a dark time for me. I don't even know how I made it through, especially when they told me that, after everything, I’d have to have an open-chest surgery. I was 26 at the time.
Needing My Family
My family was still in Lebanon. At first, I told them, “I need 5 days in the hospital and then I'll be back to normal; don't worry.” Things started to get really bad, and I wasn't getting better at all. Honestly, I was crashing. I needed family by my side because it's a really big surgery.
My parents started applying for visas. But it was the holiday season, and it was really such bad timing for everything. The hospital helped me with visa documents for my sister. My surgery was scheduled for Dec. 23. My sister got the visa on the night of Dec. 21, and 3 hours after getting it at the embassy in Beirut, she was on a flight to Canada.
I learned after the surgery that my tumor was malignant. The doctors and I decided that because of my young age and my family medical history, I wouldn’t have radiation therapy. I’d have more side effects than benefits. For now, I would have frequent scans, at first every few months, then every year, to check for cancer recurrence.
My sister was only able to stay for a month. After that, my mom was able to get a visa. For the months of January, February, and March after my surgery, I was with them. I needed help with everything. I couldn't do anything on my own. Since then until now, I've been alone. I have amazing friends here. Honestly, they're almost like my family. I can count on them for anything. I don’t consider myself completely alone, but I do live alone.
Life After My MG Diagnosis
It's been quite an adjustment because even after recovering from the surgery, I still have the disease. I used to really be active – get groceries, then go get coffee with a friend, see a movie at night, come home, and cook and clean – all that we do as young people. I‘ve had to learn to be patient with myself, and my body, after going through all these changes.
The main meds that I take for MG, and that most of the patients take, are steroids. Because of the steroids, I gained a lot of weight in a really short period of time. I had a lot of bad side effects that I needed to get used to and to monitor. I think it's changed a lot in me in a sense that I appreciate even the smallest things. Even just having hot chocolate with a friend or watching a good movie, going on a small road trip, everything feels different because I escaped death.
I'm doing much better thanks to physical therapy. Taking care of my mental health has helped me a lot. I'm looking forward to going back to work. I know it might be a challenge to go back after all of this time, but I'm ready. Hopefully, everyone will be understanding and have patience when I have bad days. Life is too short to give up now.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Krystel El Koussa, Montreal.
Myasthenia Gravis Foundation of America.
University of California Irvine Health: “Myasthenia Gravis and Thymoma.”
National Institute of Neurological Disorders and Stroke: “Myasthenia Gravis.”
