If you’ve come across this article, you probably already know what is multiple sclerosis (MS). It is known to the public as one of the more serious diagnoses, and that’s why I wanted to share my story to show that it can have a milder course and that it’s possible to live a fulfilling and joyful life with it. I won’t go into describing the disease itself, so if you’re unfamiliar with it, I can recommend, for example, this MS guide on WebMD, which can answer a range of your questions.
You can find out about my current condition and what I do to slow down MS in the article The Present.
Diagnosis (2009)
MS started showing its horns in May 2009. I was 23 years old and attending university. Toward the end of the week, I noticed that I had slightly impaired vision in my right eye. I attributed it to fatigue from constantly staring at the computer screen while studying or working, so I decided to take a weekend break. It didn’t help. An eye examination didn’t reveal anything wrong, so I was referred to the hospital’s ophthalmology department, where they were expected to know more. And they did. It seemed to be a classic case where neither the doctor (ophthalmologist) nor the patient could see anything – optic nerve inflammation.
They immediately referred me to an MS centre, where treatment for the attack began (with Solu-Medrol) and further procedures (appointments for a lumbar puncture and magnetic resonance imaging) were scheduled to confirm the presumed diagnosis – MS. During the worst phase, before my vision started to improve, it was like if I had plastic wrap over my eye. When I looked at a page, I could see that there was a headline and text, but I couldn’t read it. After the treatment, my vision returned almost perfectly.
I must say that the most challenging phase of the disease for me so far was probably the month leading up to the confirmation of the diagnosis. From various concerns that it might be something more serious, to reading different information about MS, to imagining how everything would be in my case. The uncertainty was the hardest part – whether it would ultimately turn out to be MS or something else, but what?
Initiating Treatment and Navigating Life with MS
I immediately enrolled in a study for interferon treatment. My first medication was Avonex. It was an injection into the muscle once a week. I managed (more or less) to administer it myself. I did the injection in the evening, hoping to sleep through the flu-like symptoms and avoid taking additional calming medications. It was hit or miss. Sometimes I didn’t even notice it, other times it felt like having a fever, and occasionally I experienced chills. Maybe it depended on where exactly I hit 😊.
Sometime towards the end of the year, possibly after a viral infection, fatigue set in. I would wake up feeling almost as tired as when I went to bed. Fortunately, it lasted only for about two to three weeks. In 2010, another worsening/attack occurred. There was mild numbness in my leg and slight dizziness. At the same time, I started struggling with the Avonex injections – it gradually became more difficult. Sometimes I would spend 15 minutes trying to convince myself to do it until one day I simply couldn’t persuade myself anymore. So it was convenient that I switched to a new medication, Rebif, due to the relaps. It was an injection under the skin three times a week. Luckily, there was a “little machine” to do it, so all I had to do was press a button. The flu-like symptoms didn’t change much. I stabilized for two years.
Overall, from the time of diagnosis, it was a period of navigating life with MS for me. I got a glimpse of how impaired quality of life can be during relapses and flu-like symptoms, and it dawned on me that I needed to do something for my health. I made some adjustments to my diet and started exercising. Well, at least I started practising tai chi. I have reevaluated my values and priorities and went from envisioning myself in a wheelchair to adopting a more positive outlook on life. I guess I needed to express myself through writing during that time – one short story at first. It also occurred to me that my fingers might not function well forever, so I started playing the ukulele a lot to fully enjoy it while I still could.
Through Attacks to a New Treatment
MS made its presence felt again in 2012 when the right side of my face became paralyzed. The recovery was very good, although my eye bothered me a bit afterwards. Perhaps I didn’t give it enough attention during rehabilitation. When shifting my gaze from left to right, my vision would get slightly “disturbed” at a certain point and then readjust itself. I had a lazy eye when I was young, so it might have been related. Probably since this relapse, although I can’t recall exactly, I started experiencing some text doubling in the evening when reading. It only happened when I was very tired, but it wasn’t pleasant. I could read with one eye (covering the other) or have the digital text read to me on a tablet.
A period of calm followed, almost until the end of 2018. I finally became more active and lively. I even started dancing swing and eventually playing in a band. My schedule was always full. I also dealt with the search for a girlfriend. My ability to establish connections was already quite tragic, and stories about how relationships tend to fall apart due to MS didn’t help either. What proved helpful was sharing my experience on an MS forum, where I received encouragement (unfortunately, I don’t remember which site it was). So, I set a rule for myself to disclose my MS early on in the dating process. I allowed myself to engage in dating 😊, and eventually, I found love.
As I went for a longer period without a relapse, it increasingly seemed that the medications were causing more problems for me. The flu-like side effects often disrupted my sleep. My colleagues at work knew that I wouldn’t be very fresh and talkative on Monday mornings (injections on Sunday, Tuesday, and Thursday evenings to have a longer break and rest over the weekend). Sometime in August 2018, I started reducing my working hours – not that I couldn’t work, but I wanted more peace of mind. Probably due to the injections and lack of sleep, I often had headaches in the evening, and the pain sometimes shot up to that affected optic nerve. I had matured to the point where I wanted to consult this and make a change. However, the solution came on its own. November brought the tingling in my legs and the evident progression on the MRI supported the offer of changing the treatment.
Finally Without Injections
The year 2019 brought significant changes – a substantial change in my diet (March), the end of injections (April), and another period of calm with minimal traces of MS.
Wahls Protocol
My girlfriend became interested in fasting, so I thought I would join in. I started looking for information on whether it was suitable for MS. In the process, I came across a fascinating TEDx talk by Dr. Terry Wahls – Minding your mitochondria, where she describes her own story. She has MS herself and developed her own protocol (three variations of “diets” and additional recommendations for treating chronic autoimmune diseases using paleo principles). By following her protocol, she went from being in a wheelchair to an active life. I read her book (I recommend the expanded edition with the blue stripe on the cover), and in March, I started the Wahls Protocol (the basic version – Wahls Diet).
The Wahls Diet is essentially a modified paleo diet, based on the Autoimmune Protocol (AIP). The foundation is to consume 9 cups of fruits and vegetables from different categories daily to obtain the necessary nutrients (3 cups of leafy greens, 3 cups of colourful fruits and vegetables, and 3 cups of sulfur-rich vegetables). It is also gluten-free, dairy-free, and egg-free. It recommends minimizing salt, and sugars, and incorporating nuts and fermented products (kefir, kimchi, sauerkraut, etc.). The protocol includes various other recommendations, such as exercise.
This diet made sense to me. It involved providing the body with a significant intake of vegetables and fruits for essential nutrients while eliminating possible allergens. These basic allergens are such a significant part of our diet that without reducing them, we may not even realize that they are causing us problems.
CAUTION! When making such significant changes to your diet, it is recommended to consult with a doctor. However, I did not do so.
I started practically overnight and gradually figured out what I could eat. Otherwise, I might never have started, and who knows how long I would have stayed just “planning”. So I ate a lot of leafy green salads before diversifying my meals. I didn’t feel like preparing lunches at home, so I went to restaurants. I found out what individual dishes were made of to avoid allergens as much as possible and experimented with different combinations of main courses and side dishes. It certainly wasn’t a perfect restriction, but I tried my best. It shouldn’t have surprised me that these basic allergens are simply abundant in Czech cuisine (not that it’s much different from other European cuisines in this matter). So, when it came to lunches (restaurants), I initially ate more meat. For breakfast, I made a lot of smoothies. Since then, I’ve eaten fruit almost every day for breakfast (there’s always fruit in the kitchen now, whereas before I didn’t eat fruit very often).
The results started to show in the first month even before starting the new treatment – improved vision (respectively the disappearance of occasional double vision when tired) and a reduction in headaches. I felt like I had more energy too. However, in April, I started the new treatment, so I can’t precisely say if the further overall improvement was due to diet alone, medication alone, or a combination of both. The continuation of the description of the Wahls Diet follows after a brief interlude about the new treatment.
Mavenclad
In April 2019, I began a new treatment – Mavenclad (Cladribine). It is a pulse therapy in tablet form – a peculiar system where, in the first year, you take tablets for 5 days, then nothing for the rest of the month, and the following month you take tablets for 5 days again, then nothing for the rest of the year. The same cycle is repeated for the second year, and the following two years are medication-free. In total, it’s a four-year treatment plan.
A crucial change for me was getting rid of injections. This eliminated the flu-like syndrome from my life, and overall, it significantly improved my sleep. Although I was actually a bit surprised that I still woke up several times during the night – I used to attribute that to the medications.
Continued Improvement (Wahls Diet Continuation)
After changing my treatment, I continued with the Wahls Diet. I think I tried to adhere to the protocol more strictly for about six months. I didn’t completely eliminate allergens, but their quantity was kept to an absolute minimum. The change in breakfast itself and the overall reduction in sweets must have had a significant impact. Previously, I often bought sweet pastries on the way to work, but then it became more about the aforementioned smoothies.
My condition continued to improve in the first few months. Blurred vision no longer appeared, and my vision stopped getting “distorted” when I shifted my gaze from one side to the other, so my eye was essentially “normal”. Headaches and shooting pain in the eye also subsided. With the elimination of injections and improved sleep, it actually felt like I didn’t have MS at all. Except for a few minor details that I describe more in the article The Present. Simply a normal life.
A somewhat unintended side effect of the Wahls Diet was that I lost weight – perhaps more than 10 kg. I didn’t do it for weight loss, so I’m not exactly sure how much it was. Before the diet, I usually reported my weight as 73 kg. Then I weighed myself in November, and by then, I was at 62 kg (which was probably the minimum, as then my weight fluctuated around 63). The change in diet also greatly improved my digestion and bowel movements.
About six months into the diet, I started deviating from the “rules” more. I didn’t consume the prescribed amount of fruits and vegetables anymore (it seemed to me that in those six months, I ate more salad than I had in my entire life before the diet), but fruits and vegetables still remained a significant part of my diet. Gradually, I also limited my meat consumption and replaced it with vegan cuisine. I even allowed myself to consume some allergenic foods. I created complex tables to track what I ate and if I felt any changes over several days, such as a slight pain behind the eye or increased fatigue and headaches. However, I didn’t find any significant patterns. Here, I made a big mistake by not trying to exclude only one allergen for a period of time and observing its effects before potentially including it as harmless. So, while I didn’t strictly adhere to the protocol, I certainly didn’t consume allergens in the “common” quantities.
Monitoring without Medication
In April 2023, my first four-year cycle of above mentioned Mavenclad ended. My condition improved during the treatment, and my MRI scans looked good, so I transitioned to a monitoring phase without medication.
Wahls Diet – Gluten Culprit?
Finally, I started isolating allergens as I should have done a long time ago. That is, I diligently included one allergen for a period of time and observed the results. I don’t know why I didn’t do it correctly much earlier. After a few days of increased gluten consumption, I noticed that my memory was starting to deteriorate slightly, I felt a bit dizzy, and the pain behind my eye returned. On the 6th day, I eliminated gluten again, and then after about 10 days, everything was back to normal. It could have been a coincidence, so I need to repeat this experiment to confirm, but for various reasons, I haven’t gotten to it yet. I also tested dairy products, and they seemed fine, so I included them in my diet to a lesser extent (I don’t want to overdo it, and I don’t really enjoy cheese as much anymore).
So far, I haven’t experienced any worsening of my health after discontinuing the medication.
You can read more about my current situation and what I’m doing to slow down MS in the article The Present.