My diagnosis journey toward MS is a lot more… diffuse. Many vague symptoms during a time of many changes in my life so a fast diagnosis was not given. I know many have have to wait a lot longer than me, but I’m just saying I could have seen and recognized the symptoms earlier.

Early spring 2017 I visited the endometriosis center in Malmö and they put me on Synarela and Estradot. Synarela is a GNRH analogue in a nasal spray form and Estradot is estrogen to help with the menopause-like side effects of Synarela. A couple of weeks later I started to feel a pressure on my left lower arm, like an elastic band a couple of centimeters (maybe an inch) below the elbow. I was worried it was thrombosis caused by the new hormonal treatment. So I booked an appointment with my GP which sent me to the ER for the correct blood sample. They didn’t find anything out of the ordinary.

Meanwhile, I started feeling a numbness in my left foot and leg while relaxing in the couch in the evenings. I thought it was normal, nothing I spent any time thinking about.

A Sunday in May I had numbness on the left side of my face and difficulties swallowing food and drinks. Also my voice felt deeper and more… hollow? Again my GP sends me to the ER. And at the ER an ear-nose-throat specialist puts a camera up my nose and sees that my vocal cords is not moving as they should. They also ruled out facioplegia. As time goes by as it always does at the ER, at 3 am the staff asks me to go home and come back at 8 am when the neurologist on call would be there. I was given the choice to sleep on a bunk in a corridor, but I preferred my soft and warm bed in my quiet bedroom.

After a few hours of well needed sleep we went back to the hospital. The neurologist sent me to get an MRI on the Thursday after. It was not a pleasant experience! When I got ready to leave the examination room, the radiology nurse asked me whether I had a booked appointment with my neurologist? At this time I believed all of my symptoms were just some sort of virus infection, like my dad had had a couple of months earlier, so I was not worried and told him I would call the doctor on Monday if I didn’t hear from him. Looking back, this is when I should have been starting to get worried. For real.

Less then 24 hours after the MRI exam (Friday) the neurologist called and asked me to visit him on Monday after work (I worked at the hospital during this time, so it was convenient for me).

Monday I am feeling a bit lighter in what I now know as brain fog and went happily to the appointment, still thinking it was just a virus or something. Because of this mental image I went there alone with the promise of calling my then husband directly after. So when the doctor said those two words, multiple sclerosis, I was completely unprepared. I had heard of the disease beforehand, heck I had even done a paper on it during my studies to become a pharmacist! I told this to the neuro doctor and he was happy? Relieved? He was smiling, I remember that. He even suggested I would read up on the different treatments, of which he suggested natalizumab (trade name Tysabri). I really appreciated that he recognized my background and knowledge but my brain felt like a horn’s nest! I couldn’t read focused on a text for more than 15 minutes and definitely not process the information! He told me he would bring up my case on a meeting with other neurologists where they would debate what treatment was best for me. I had until after the meeting to read up on the treatments. He also needed to do a lumbar puncture (LP). This turned out to be unexpectedly difficult. The night before I had been kept up late with endometriosis pain. In my case the pain often results in cramping in the lower back. So, where the LP needle is supposed to enter. Also I am a bit overweight which also can make the procedure more difficult. Anyway, after one failed attempt the doctor decided that it would be done using x-ray.

After a couple of days I got the notice of the booked radiologist appointment – in 3 weeks! I didn’t want to wait that long before starting treatment! By the way, no one mentioned steroids at this point which I have learned afterwards is the procedure during bad remissions. So I called the neuro doctor and asked him how sure he was of his diagnosis. He said he was 98% sure! Together we decided we could start the Tysabri treatment before the LP.

Now, several years later, I am still on Tysabri. I have of today (February 2021) not had any mayor remissions, so I guess the treatment is effective. And I really appreciate being able to casually talk to a MS nurse every month with all the little questions that pop up with a new disease.

2020 there was new directives using Tysabri while having had a John Cunningham (JC) virus serology above 0.9 at any time. I will write a post about the JC virus, PML and the risks of the Tysabri treatment later on. So starting in the fall of 2021 I receive the treatment every 6 weeks, instead of 4, to prolong how long I safely can receive this treatment.