Okay, so here I was. In the hospital, waiting for my first examination of the day. It was my second gastroscopy and I had a good feeling (or so I told myself). In a way, I was looking forward to a nice “nap”. The last time, it had been so deep and restful. Not this time. This time I had very vivid dreams. As far as I can remember, I dreamt that I was being held captive and waterboarded and that I had to fight back.
When the examination was over, my mother asked me whether I could remember anything. She had helped with the procedure and explained that I had tried to pull the devices out of my mouth and that they couldn't calm me down – all while I was heavily sedated with Propofol. In the end, they had to "bring me back" briefly and sedate me again to be able to complete the examination. In retrospect, I was probably not as relaxed as I had told myself and everyone else.
On the way to the lumbar puncture, I grabbed something to eat from the cafeteria. I had to be “sober” for the gastroscopy - so I desperately needed a cup of tea and something to eat.
I didn't really know much about the procedure, except that there are probably more pleasant things in life. I had also been told that I would have to lie down for an hour afterwards and that I should drink plenty of water to prevent headaches. So, armed with two litres of water and my headphones, I went upstairs for the examination.
A friendly assistant doctor welcomed me, explained the procedure and showed me to my room. Luckily, I was alone in the room. I hate having no privacy in situations like these
After administering the local anaesthetic, she repeatedly asked if I could feel anything.
Ehm… excuse me, isn't that the point of an anaesthetic?!
She then stopped what she was doing and called for reinforcements. The senior doctor pointed out that a children's syringe probably wasn’t the right choice. It would have to be a regular sized needle.
Go back to start… do not pass go… do not collect $100
Luckily, the first attempt with the right needle was successful. And now I know why she had repeatedly asked the question. I didn't feel any pain – but it did feel like my intestines were trying to squeeze into a tennis ball. There are more pleasant feelings, but at least it was painless. All done! I got to go home. Hopefully, I’d have some answers soon. I just wanted to know what was wrong with me, to have a diagnosis. I wanted to know what I was up against.
During this time of uncertainty, I was glad to have my family and friends around. My girlfriend, who is now my wife (whoop whoop!), was always there to support and advise me. She read up on the examinations, informed me about possible causes for my symptoms, what treatment options are available and so forth. My friends provided the necessary distraction and my family cheered me up. They didn't know what it was either and the worst suspicions had already been ruled out
Dear life, when I asked if my day could get any worse, it was a rhetorical question - not a challenge!
In autumn of 2018, the pending diagnosis was of course hot topic number one. Everyone in my family and circle of friends was waiting to know. Even when my aunt went for a routine check-up at age 50, it was me she was worried about. And then we got punched in the face! She was diagnosed with cancer - bowel cancer! What the f***? Why? Why our family again? Haven't we been through enough already? My situation suddenly seemed ridiculous. I didn't want to talk about it anymore or share my worries. After all, I didn’t even have a diagnosis yet. Maybe it was a lot of fuss about nothing! And even if it really was MS – what was that compared to cancer? Whoever came up with this storyline – go f*** yourself! My aunt immediately started therapy. It has been a rocky road! There have been ups and downs and it isn’t over yet. But she is so brave, and I am so proud of her and admire her positivity through it all!
A few days after the lumbar puncture and gastroscopy, I received the phone call, and a consultation was set up. Finally! After all the examinations, the neurologists were hopefully going to give me a diagnosis or at least recommend therapy that would help me regain feeling in my left arm. During the consultation, the nerve paths in the spinal cord were compared to motorways with crash barriers. If these crash barriers have holes, inflammation can develop. At that point, I wasn't exactly sure what that meant. In any case, I had to have another MRI done. This time of my cervical spine.
One week later, I was back in the doctor’s office. The new images showed that my cervical spine was inflamed.
At last! We knew what was causing my numb arm! A problem that can surely be fixed!
The neurologist recommended fighting the inflammation with cortisone infusions. Five days of infusions to be exact. He told me to look out for any changes and come back for a follow-up in the new year.
For some reason, the neurologist sent me to the oncology department for the infusions. So, there it was again! Damn cancer – it’s everywhere. The other patients in the room were receiving chemotherapy. They were fighting an unimaginable battle and I was sitting there feeling ok. Of course, that dampened my mood enormously. So, from the second day on, I brought headphones with me and listened to music. It was my escape, my way of not letting the setting get to me.
The cortisone infusions had two side effects:
- Everything tasted weird
- I couldn’t sleep
Nevertheless, I was feeling ok.
As cortisone works great against inflammation, I was convinced that the feeling in my arm and hand would return and everything would be back to normal in no time! You guessed it - wishful thinking. In January 2019, the symptoms were persisting. As instructed, I decided to schedule the follow-up appointment with my doctor. I was then told that he had retired on December 31st. Maybe he forgot about his upcoming retirement? Because he had asked me to report back to him in January! The nice lady on the phone offered to schedule an appointment with his successor. I declined. I didn't want to go through everything again. I didn't want to redo all the tests. Simply NO!
Instead, I went to see my family doctor. I told him that I suspected it was multiple sclerosis, but that no one had ever confirmed it. He explained that according to his notes, the neurologist had come to the same conclusion.
I asked him what was next. Together we decided that I should continue my treatment with the MS specialists in Bern. I was happy with this course of action! Not because I didn't trust the local doctors, but because I wanted to be working with the best in the field. I wanted to avoid “beginners” and medical students.
Of course, this meant several appointments in Bern and more MRI scans. Once they had the images, I was invited back for a consultation, this time with my now wife. They confirmed the diagnosis. They also presented various therapy options and suggested two different tablets. Both very promising, both with similar risks and side effects.
At home, my partner and I weighed out my options.
As I have mentioned before, she had already done a lot of research and when it comes to medication and therapies, she is an expert anyway.
I love her for the commitment she had then and still has now. Some people call their partners "their anchor". But an anchor holds you in place and slows you down. She is my engine, my drive force – she is always pushing me forward!
We decided that I would try out Tecfidera. Personally, I would have preferred the other drug as it’s only one daily dose. However, my medical history ruled it out.
At the second consultation at the MS clinic in Bern, I was given the opportunity to ask all my questions. It felt very liberating. The doctor took her time and answered all my questions comprehensively. I felt like I could trust her. My biggest question was of course:
Will I end up in a wheelchair?
It was an indescribable feeling of relief when the doctor told me that this was unlikely. Lucky for me, the disease was detected in a very early stage and nowadays therapy options are promising. She told me that the probability of needing a wheelchair due to old age is greater. Even though it wasn’t a definite "no", I felt relieved.
Later that day, I started researching.
What are possible outcomes? What are likely symptoms? What does the usual course of disease look like?
I had to stop reading. This disease is so cunning. It can look different for everyone and can be hard to diagnose. I may never end up in a wheelchair, but at one point I may need walking aids. No one knows and no one can predict what will happen in my case. This is when I made the decision to challenge myself physically every year. I wanted to do things no one expected of me. Because in my eyes, as long as I challenge my body, I can keep this disease in check.
The plan was in place - one challenge per year! 2019 had already started and I had no time to loose. Ready, steady…
…GO!
P.S. Thank you for making it this far and thank you for all your kind messages! I'm surprised how many of you found your way here even though I didn’t really shout about it from the rooftop.
P.P.S These blog posts are in no way perfect. I’m writing them as I go along. I don’t really have a plan yet and I certainly don’t proofread before posting. With time, I might go through them again to correct mistakes, but I want them to be as raw as possible – just as I remember the events.
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