My story

Hi, I'm Stephan, 33 years old. A cheerful boy who is always willing to help others, a hard worker and someone who strives to get the best out of himself. Almost three years ago 'MS patient' was added to this list. Although this has made life a lot harder, and will gradually become more difficult, I still try to remain true to the above characteristics. If you are curious about the whole story, you may read further below.

How it all started…
Although this diagnosis was only made three years ago, a further three years earlier there were already several small attacks and symptoms, the most severe of which occurred in June 2013. Everything seemed to be moving in the right direction in my life at that time. I had finished my studies and had just started my new job in IT. As icing on the cake I was on vacation in America at the time to travel around. At the start of this journey some eye problems started to occur. I noticed that I had a lot of trouble looking at my phone, I had double vision and this continued when I looked at things at a short distance. I paid not too much attention to this and blamed it on the long journey and jet lag at that moment. These eye problems gradually became less, but I started to feel very sick on the last day of the vacation. I was pretty tired and had very little energy. When it was time to pack my suitcase this went very slowly. I noticed that I had to recover a few minutes each time after I had folded one item of clothing and put it in the suitcase. During the flight home I also felt bad and at home I quickly went to bed.

The next day I woke up and it was time for the next problem. I opened my eyes and it felt like the room was spinning! This made me very dizzy and had to vomit as a result. At that moment I immediately made an appointment with the doctor. The symptoms of dizziness matched inflammation of the balance organ, so this also became the diagnosis. Taking a week or two to rest should be enough to recover from this. Unfortunately this turned out not to be the case ...

After about four weeks the dizzy spells were still just as fierce. After visiting the doctor a number of times, I was told that this could also have become chronic. In the following months other problems began to appear. The eye problems (double vision) came back, I was often very tired and I started to suffer from palpitations. Almost every month I was at the doctor office again with problems and for everything I got a referral (eye doctor, heart film making, blood tests), but this all brought no clarity. Moreover, they could not explain the palpitations and this did not fit in the list of other symptoms.

The redeeming word
After almost three years of regular visits to the doctor I received a referral to the neurologist. Here I was asked to tell the whole story again together with everything that bothered me. After this, a number of small tests were performed and the neurologist said that he was worried about a number of things and that he wanted to make an MRI to be sure. Shortly after making the MRI I visited the neurologist again and the diagnosis was: Relapsing Remitting MS. The palpitations were also explained: normal panic attacks! Although it is a pretty tough diagnosis to get, I felt an incredible calm when I heard this. After three years of uncertainty and the feeling that I was going crazy, it was finally clear what was going on. Although this did not change anything about the problem, the panic attacks disappeared.

What now?

Current treatment
The next step was to determine the treatment process. A visit to the MS nurse brought a wide range of possible treatments, of which 'Copaxone' was ultimately chosen. This was one of the few drugs that had no flu symptoms as a common side effect. The medication meant that I had to inject myself daily to slow the progression of the disease. In addition to medication, I have also made many changes to my way life. For example, I stopped smoking and started eating more healthier food. Eight months after the start of treatment, another MRI was made and there were six new damage spots to see, particularly many! From that moment on I was advised to switch immediately to heavier second-line medication. After a few studies to identify risks for some medicines, it turned out that 'Fingolimod' was the best (and safest) option for me. Although this medicine is relatively safe, there are still plenty of risks involved. Just to name a few:

- Heart problems (mainly in the first month)
- Increased risk of skin cancer
- Increased risk of infection (Herpes in particular)
- Chance of a deadly brain infection (PML)

Of course, measures are taken to steer these risks in the right direction: Regular blood tests, regular check-ups at the dermatologist, various tests before the start of the process, etc. etc ... Although the drugs seem to work well, the serious possible side effects do cause a constant fear. In addition, these drugs can usually only be used temporarily. I have been on the lower limit of leukocytes (white blood cells) for quite some time. If I fall below this limit, I will have to stop taking this medication, because the risk of a brain infection (PML) will become too great. Not a very nice prospect ...

Next step?
Since my diagnosis three years ago I have seen my body deteriorate little by little, both cognitively and physically. I suffer a lot from fatigue, problems with memory and concentration and my mobility is gradually decreasing. Where I used to be able to walk about six kilometers 2,5 years ago before I started to experience a lot of problems, this is now less than a kilometer. So it will probably be a matter of time before I can't do this at all anymore. Together with all other limitations, this ensures that I can undertake fewer and fewer activities and that I am increasingly becoming more homebound. I am also no longer able to maintain my house properly, luckily my mother is so kind to help me a lot with this. Of course this also feels very annoying as well, it makes me angry and sad that I am unable to take proper care of myself. I am still working full time at the moment and I would like to continue to do this. However, it is not possible to tell when the next inflammation will occur and what problems this will entail.

All medicines on the Dutch market are 'inhibitors'. They delay progression of the disease, but a solution is not yet in sight. However, other treatments are possible in other countries. In countries such as Sweden, England, Belgium and Germany, but also Mexico and Russia, use is made of the so-called aHSCT treatment (autologous hematopoietic stem cell transplantation). This treatment 'resets' the immune system and puts the disease to a halt. You can read more about the aHSCT treatment on the 'the aHSCT treatment' page. The results of this treatment are incredibly good, and for instance in Sweden this is already reimbursed by healthcare. The treatment has had very good results. The purpose of this treatment is to halt the progression of the disease. However, this treatment does not exist (for MS) in the Netherlands and treatment abroad is not reimbursed by health insurance, which means you have to pay for the entire treatment yourself. The total amount required for this treatment is quite high, around € 90.000. That is why we need your help to raise this amount! Your contribution helps me to continue my life as well as possible and could prevent me from becoming dependent on a wheelchair.

Thanks in advance,

Stephan