My 22 years quest with MS medications – From despair to strength –

The neurologist at the time thought to start already with some medication even before my official diagnosis. The very first treatment that I had was some cortisone pills for about five months. I had done already multiple MRI’s that have shown many lesions, especially one lesion that was really, really big. I also had my results of the spinal tap. I just got a confirmation that «Yes, yes indeed, you have M.S.» and this is all I knew.

Anyway, to go back to the medication. So, continuing the cortisone pills, I started to have five doses of Mitoxantrone. Mitoxantrone is an infusion that at that time at least was used mostly for patients with cancer. It was a form of chemotherapy basically, that had very strong side effects. During these infusions and for some months I was really feeling very bad. I was feeling so sick. I had zero, zero, zero, energy. I couldn’t do anything. My hair had started to fall. This was a very challenging moment to do these infusions.

Right after that, I had to start a progressive medication. At the time my doctor presented it as this super powerful treatment that is very promising for the future and for your overall evolution with M.S. This treatment was called interferons. It’s kind of funny how history changes perspectives and situations because not that long ago I was talking to a woman that also has M.S. and when I was describing to her the different treatments that I had and I mentioned interferons, she said, «Oh, this old treatment? Yes, I have heard of it!” So you see how things are changing. The biggest problem for me with this treatment is that they were injections. When my neurologist recommended for me to start with interferons I can tell you that it was a very difficult phase because I really didn’t want to do these injections.

I started with Rebif that was three injections per week, and because the doctor saw how reactive I was towards starting this treatment, he said, don’t worry about it, you won’t be taking this treatment for too long because as we speak, there is a different type of medication that is in the process of being approved and going out in the world to all the patients. This new treatment will be a pill. It’s going to be in the form of a pill that we could just swallow. So, no injections, nothing like that anymore. «But please», he said, «be patient as it’s soon on the way for it to be out to the public». So I thought, okay, I will wait. What else can I do? And in the meantime I will do my interferon injections until something else comes in the market.

So I started the interferon and it was very, very challenging. And because I hate injections and also because there were a lot of side effects. The side effects basically were that I was feeling as if I had a flu. I was feeling as if I was sick. I was tired a lot. My bones were hurting. I was cold. It was as if I had fever and all of these symptoms that all you want to do basically is go to bed and rest. And these first injections with the Rebif medication they were with this teeny tiny little needle that you can do just under your skin. And I was doing them mostly at my legs, a bit at my butt as much as I could turn. And at first I was using this special gun that this company had, you know, this gun that you put and you do pppffffsss and the medication gets in the body very, very fast. But this was hurting me so much. This was, like, impossible. I thought, I cannot do it. It hurts too much. And then I started to do these injections without the machine. So I was doing them on my own. But because I don’t have a lot of body fat, I couldn’t do it in different spots that normally could have been alternatives. When I tried to do on my arm or on my belly, it hurt a lot because I don’t have a lot of fat. So, the only available spots that were a little bit more «fatty» were a bit around my thighs and my butt, let’s say. Too much information, yeah! The problem was that after repeating over and over and over again these injections, my skin started to hurt a lot in the level that I could hardly sit.

So, this was very challenging because I had and the M.S. symptoms and the side effects of the medication of feeling sick, plus all this pain on my body due to the injections and due to the needles and to go over and over again, plus the liquid over and over again. It started to create like little, you know, balls of medication, basically, that was not going in the system.

Every year I would go to my doctor and ask, «Where’s the pill?» And every year my doctor would say, «Don’t worry, it’s on its way. Next year it’s going to be here.» Four and a half years later, when I couldn’t sit anymore (due to the pain from all the injections), I went to my doctor and I said, «Please, I suffer so much, I can’t.» So, he said, «All right, you still need to be on the interferons, but I’m going to give you another brand that this one will be one shot per week.»

And this is where I started to take Avonex. Avonex is another type of injection with a bigger needle that basically goes into the muscle. Which for me was even more horrible actually, because you had to go through to really go into the body, but at least it was once a week. So this helped me to think, Oh, it’s going to be hard, but at least it’s going to be one day of the week and the rest six days I can kind of, you know, be more free, live my life and not be sick in the same level I was before with the previous interferon. And indeed with Avonex, I was much better. I got still these side effects of the flu, but at least these lasted only one or two days max. So, the rest of the days I was better.

And this was the phase where I could finally start to live again, where I started to study again. So I was much more free and I started to have more dreams that I wanted to follow and goals. So this was already a better phase. But still I was very, very hopeful on «Where is the pill? When is the pill coming?»

So, same story every year. I keep going to my doctor, «Doctor, please. WHERE IS THE PILL???» The pill arrived in total after nine years that I was doing interferon injections… Unbelievable, isn’t it?

What really helped me to go through all these years was the hope that next year the medication that I’m dreaming about is going to arrive. If I knew that it would be nine years of interferons, I don’t know if I would manage to handle it, but the thought that next year it’s here, next year it’s here, next year it’s here, kept me going and kept me be somehow positive and not give up on this treatment.

2011 is here! We have progressed so much that finally A PILL has arrived and this is when I started to take Gilenya. Imagine the relief after all of these years with so much pain, so many side effects, so much pain from the injections. Oh, finally the time had come to just take a pill. To take just ONE pill! I was crying from happiness, not being able to believe that finally this moment is real.

So, taking this one little pill every day was like nothing. I almost felt like there is no treatment happening. So, I was taking the Gilenya and it worked fine. The only thing that I noticed, but to be honest, I am not sure if it was due to Gilenya or not, is that I had migraines very often for years and years and years. About three times per month I had a migraine that lasted two or three days. And what helped me a lot for the migraines was another pill called Zolmitriptan. And this was very good. It really relieved the migraine, but made me very, very sleepy. But okay, at least I had no strong pain anymore, which was very good.

After 11 years of Gilenya, we’re now in 2022 in time. I went to my doctor and I said, «I don’t want to take this pill anymore. I don’t know why, but my body starts to react to it. Not in any real physical way, but more in my mind. I felt like I don’t want to take it. I don’t know why. For no particular reason». It was my body that decided that it didn’t want me to swallow it anymore. So, I went to my doctor and I explained exactly the situation. I said, «Is there any other treatments? Something that could be an alternative and more new?”

I wish to share with you that when my body requests something, I’m doing my best to trust this body and to listen to it. For instance, like in the case with the pill, I was taking this Gilenya pill for so long, it was not doing me any harm, my MRI’s were stable, my overall image was not bad. I just had these migraines. But my body said, «No». I don’t know why, it just said no. And this is when I thought, okay, if my body doesn’t want it in a natural and easy way, I will listen to it because in the past I had to go through so many things, you know, with this interferons that I had to oblige myself to do this, which were nine years of a lot of pressure towards myself.

But I had to do it so I won’t get worse. But after that I thought, no, I don’t want to go through again these challenging situations where my body is obliged to accept and accept and accept things that it doesn’t want to. And this is why, even though it was a simple pill, my body said not anymore. And this is why immediately I went to my doctor and I said, «Please, what would be an alternative for me?» And my doctor recommended Ocrevus.

Ocrevus is an infusion that we do every six months. We need to go in a medical facility and following a specific process that lasts four and a half hours, we get this treatment. So far, I have done in total three rounds of Ocrevus. So, three times six months and the very first time someone takes Ocrevus, it happens in two doses. So let’s say it’s two doses half-half and then six months later another dose, six months later, another dose. This is where I am at right now. I’m very satisfied with it, my body reacts well, my MRI shows no progression. And the best part, even though it’s something that is again, with needles, it’s great that it’s every six months. And then for half a year I don’t have to think about any M.S. treatment again. And for me, this is very liberating. I almost forget about it and it’s really great.

In an MRI that I did four years ago in the middle of my treatment with Gilenya, it showed a small improvement in my overall results of that MRI. So this was really wonderful. During that time, I was not just taking my treatment and relying only on that. I was also doing a lot of breathing exercises and also I had some sessions with a coach that helped me with a field called Neuro Athletics that is basically focusing on helping the body and different parts of the body to wake up again and to work in a better way. And this was especially in my feet because I didn’t feel my feet. I still don’t feel them 100 %. But let’s say the left especially was very bad.

So, I was also doing different things. I’m always searching for new approaches, alternative approaches, but without putting myself in any threatening position or danger, on how can I get better. This has always been my goal. Mostly the last ten years: how can I get better? I want to get better, I want to get better. And this has never stopped. Even now I’m taking Ocrevus, that’s very good. But the truth is we have no real evidence of where are these treatments going. It’s very good for me to take it and I have in the back of my mind that, let’s say medically I am still following the classic medicine. But that’s not all I’m doing. I’m always focusing on the answers within myself, with nutrition, with exercising, with breathing, with some level of meditation in any way that I can, and to really be mindful of my body, of my life, of myself, of my lifestyle. So I don’t just rely on the treatments. I do my treatments, and I always want to see what is out there that maybe could help me even more and in parallel, I do a lot of work with myself and a lot of work on how I spend my days and what I do in order to support myself in the best way.

I will create more content and share with you more information, little secrets that for me have worked so you can also try them and see, maybe it helps you as well. Because there are symptoms that I had that have minimized a lot, especially like burning sensations to my feet, numbness and tingling and also this feeling of like electricity passing through my leg. I used to have this a lot. Now I don’t have it, almost never. And also how to help fatigue, how to help my body to be more rested, to feel better, and also my brain.

I have said that already in my M.S. diagnosis video and I will repeat it here because I strongly believe in it, there are a lot of things that we can do to support our body, to change our symptoms and to change this path that it’s not just a one way street: I have M.S., this is my diagnosis, I have no clue what is going to happen. It’s true, we don’t know. But we can still change our overall image. We can change how we feel about all of that and we can do our best to impact in a positive way our everyday life. Personally, I will not stop my quest in discovering ways to feel better. I’m never going to stop and wanting why not to cure myself, if possible, and not only in terms of an MRI and what it shows, if there are still lesions or not, but mostly on how I feel because I’m okay to have the diagnosis, but I am not okay in still struggling.

I want to get better, much better. When my M.S. started 22 years ago, I lost the ability to walk after a snowboarding trip. 22 years later, I can snowboard again and I can snowboard since the last four years, slowly in my own rhythm, in my own way, but I can snowboard and I’m not giving up on that. I love that sport and I want to become very good at it.

Having also this motivation of «I want to get better at snowboarding» this helps me for my daily life to really focus on my well-being. I’m not going to go into details right now because it’s going to be another topic but I will tell you a magic word that can really transform every aspects of your body, of your mind, and also of your emotions and it’s called: FOOD!