The chronicle of my MS diagnosis

it was 2002 I went on a 3-day snowboarding trip and when I came back home my life was never the same again it's never easy to tell this story even though I know it so well because it's the moment of my life where I see a before and after before my diagnosis and after my diagnosis everything stops there and my life starts over basically so let's take the things a bit from the [Music] beginning [Music] 6 months before the really big symptoms that defined that something was really off with my body I was working at the time I was a hairdresser 22 years old always Super Active moving around moving fast doing a lot of things I was carrying things I was running and and helping and at the same time with a smile trying to be my best self and doing my job in the best possible way and then what happened was that for some reason during those months before the Big Crush I didn't have patience I realized that everything irritated me my colleagues were talking to me and I was not friendly uh my endurance had dropped and I started to need to sit a bit more often I was getting much easier tired also here is a paranormal of this chronic condition that only much later I realized that these were the first symptoms at the time I had a scooter and I would go to work driving my scooter and because the last month before the big crash it was already cold and the wind was on me and what happened is that half of my body but really exactly half of my body I wouldn't feel the cold at all I would even feel warm so the breeze was hitting on my my body half the body was freezing because it was cold and the other half was actually feeling almost like burning so I was on the scooter thinking that's funny what is happening here well actually that's very convenient because it's winter and I'm only half cold and this difference with the temperature also appeared when I would go down in the lower part bending when I would clean up hair after you know uh cutting hair or when my colleagues were cutting hair and I would I was cleaning up the hair when I would bend you know this move I would feel again this strange sensation a strong heat which was so strange again and this is where I started to think what is this probably nothing so I continued my work and then at the same time I was uh going out I would be clubbing a young Human full of life wanting to go out and I was was going out at the time I was also smoking and I remember a specific day that I was with a friend in a club and we were um it wasn't too busy we were at the bar and we were sitting there I was having a beer and I was smoking and what happened is that I was talking to my friend and I was about to actually grab a new another cigarette and when I was trying to touch it imagine this is a cigarette I was trying to touch it but I could not touch it it's as if you see your fingers do the move but I couldn't grab it and I thought what is happening what is it did I drink too much but I knew I didn't drink too much so what is happening here it's like moments like you don't no what is this anyway this was another symptom that appeared it was with my right hand I thought okay that's fine I will try with the left hand and indeed I tried and I managed to grab it so the left left hand was totally fine and I thought okay then I will smoke using my left hand no problem at these moments you see something strange happening but you cannot perceive or realize what could this be it makes no sense this is completely absurd how is it possible that out of nowhere I cannot grab something as light as a cigarette which by the way please don't smoke Side Story so I was trying to touch it and I could not then I would bend and I would feel the strange uh sensation of temperature I would ride my scooter again the wind on my left side would feel like very very hot that's it in the meantime I had become so irritable that I couldn't stand work anymore so you can see that the first symptoms were not only physical symptoms but it also had to do with my inner world so it was already a combination of things but at that moment I still had absolutely no clue what was was going on 2 months later I had planned to go with my then first serious relationship to snowboard in a very nice place in Greece by the way Greece has also amazing mountains to Ski and Snowboard just in case anybody's interested the place we went was 9 hours of bus travel of my home of Athens so we went to this beautiful mountain called kak Talan it was like a dream come true we stayed in this beautiful little village everything was amazing I enjoyed really so much I had the time of my life I was still learning to snowboard but I didn't care you know I would go I would fall I would get up and then again I would fall it was a whole you know sensation of every aspect it was learning it was falling it was great so there was a lot of falling down and this part is important because I had a lot of physical pain on top of that please forgive me if it's too much information but for me it's important to share this with you I also had my period on that days which means that everything was a little bit more challenging and difficult for the body but I still had a lot of endurance later when I took the bus back home so imagine 9 hours ride home I was sitting uh in different positions and when I finally arrived home I was in a very bad State I had pain everywhere even my my hair hurt but I knew why it was that because of all the falling because of all this challenge of the physical activity all of this I had so much power and then when I arrived home oh I completely collapsed so I spent a lot of time to being laid down in bed or on the sofa and instead of feeling a bit better every day because you know when you fall down you have pain and you're like okay I will rest I will take some painkillers maybe it will get better but instead of getting better every day I was getting worse about 10 days after this trip I couldn't stand up to go to the bathroom this was the pivotal moment this was not a joke anymore something was seriously off I couldn't get up I needed the help of of my parents of my mom of whoever was next to me to help me go to the bathroom and then come back and lay down and say what is this what is this what is happening and I'm pretty sure that this what is happening so many people are experiencing it when something like that shows up in their life when we realized that I was not getting better then it was the moment to start to go to doctors and see what is happening we went to a very first doctor in a private Hospital in Athens and as I was walking towards his office the doctor was looking at me so he could see me walk already and when I I came to him he examined me and did something some little tests which then much later I knew these tests these classic neurological tests but at the time it was just very uncomfortable because I had zero strength and every time he would touch my body in different spots it would feel very very uncomfortable I found out later that this doctor told my parents on that day that it's a possible multiple sclerosis but I still need to do different tests to find out nobody told me at the time since it was not official and in Greece we have this tendency to hide the truth as much as we can for as long as we can to hide it to not tell the truth to people to not tell the truth to the patients probably to protect them but you know it's still good to know the facts and the truth then I got hospitalized in that hospital right away and I stayed there for about a week in that time I did an MRI and a spinal tap the MRI already showed some lesions and after doing the final tap actually it took me over a month to not feel dizzy anymore so after spending one week at the hospital uh they were giving me some cortisone that helped me to walk a little bit better because all of this time when I was walking especially with my left foot I couldn't feel my foot I would walk and the steps were as if I'm walking on a cloud as if I see my foot I see the floor but I can not really predict where is my foot going it's like an illusion and this illusion keeps going you are looking but you have no control of what you're are looking I didn't have pain it was just that my foot mostly my left but also my right fell numb it was as if I had no sensation of it the only thing is that as I said before I had my left side of my body that didn't feel the same way as the right side this is fully happening from the top of the body until my entire left leg and this is still the case that the left side from the right side never ever felt the same again so always this left side feels a bit numb so I was taking this cortisone pills and my walking was uh a little bit better then I was sent home with a blessing it was very blurry there was no diagnosis yet I mean they would call it demalation Without Really knowing what to do after that so it was like let's see don't forget to subscribe to my channel like this video and please share it with anyone you believe can benefit from it in the meantime my family had found another hospital that was specializing in neurological conditions in Athens I stayed there for 3 weeks I need to describe just for the sake of the story how was this place so this hospital was half for neurological conditions and have um psychiatric uh unit so we had a bit of all kinds we were split somehow but still let's say where I was in the neurological sector my room had it was me and eight or nine more ladies with a whole bunch of neurological conditions so I was 22 years old suddenly in this room looking left looking right a bunch of beds in a row and every body seemed completely different everyone seemed to go through something completely irrelevant I even remember it was one lady on one side that was completely covered with a sheet and I thought she had passed away so I would walk to go to my bed and I was looking on the other side and I was so scared thinking what is happening here but on the other hand I had to stay because I had to find answers I had to understand what was happening and how will I get back to normal so I stayed there for three very very long weeks what happened there nothing much they kept giving me the ctis on pills as prescribed from the previous doctor and I would walk every day the doctor would check ah how is your walking okay they right all right okay and then the main questions okay let's see what is your temperature so okay oh did you use the toilet today uh no ah okay no right no you know there was this every day for 3 weeks this is all that happened basically I did more MRIs which showed that the legions I had especially one from this little side of a I don't know a rice let's say it had become a very big nut you know it was really really much much bigger and was this was very scary because uh at first you see oh this is so small you know on the MRI and then suddenly a big thing like that and thinking what is this after those 3 weeks I went home again and the same day that I went home something also very very difficult for our family happened my beloved aunt passed away which she was 39 years old this also made me even worse and this plays a big role because in the meantime all of this last couple of years I had to cope with this with my beloved aunt that was very ill with cancer on uh with brain tumor on her head so this probably was also the reason why the MS showed up when it showed up a couple of months later my mom found a doctor in France that is specialized in different things like that I still didn't have a diagnosis by the way they keep saying oh it's a demalation 22 years ago I had no idea what that meant no one really knew about this stuff so I went to France with my mom to another hospital to to another doctor with my MRIs and with all the results I had with me and there the French doctor said it's multiple sclerosis and you need to start a treatment right now from the very first clear indication that something was off in February until my first official diagnosis in France this was about 5 months later so all this 5 months I had no idea what was happening to me I was getting a little bit better because I still had this cortisone uh pills but I never got better fully I was never like before this is for sure at that stage I could walk a little bit better I had zero endurance I couldn't go up any stair at all no more stairs and often I needed support to hold something to sit to get up so I needed much more support to do regular things that in the past I didn't have any any issue post the the video and write on the comments below what are your symptoms what are the hardest challenges you're going through I would love to know your experience the hardest thing from the beginning up to even today is this unknown the unknown not only of the future of how is this going to develop but also the unknown of the day there is no way to predict how I'm going to feel today later today or even tomorrow there is zero possibility to know how my body is going to be or my mind is going to be or even emotionally how I'm going to be so this unknown is exhausting and is the biggest challenge that I had and have every single day some days I have so much energy that I can walk I can run I can go up the stairs I can do whatever I want I can move the whole flat I can I can pack I can do everything and then there are the other days that I cannot do anything I cannot even get up to do the basics I cannot shower because showering means standing in this flat we have a shower so I need to be able to have some energy to shower and even after showering I need to predict what is it that I need to do will I have energy for the after the shower so you see this is the difficulty to not know how you are and also that you need to predict everything predict okay what is it that I want to do today today want to make this video all right what do I need to do in order to make sure I have some energy do nothing else before and rest rest and rest and rest so whatever I want to do whatever I have to do I need to predict it to plan it I wish them to know that every MS patient presents differently as every human is unique in the same way every MS patient is unique my symptoms are just my symptoms it doesn't mean other people have the exact same symptoms they might have similar symptoms symptoms and more symptoms completely different than me for instance a symptom that is very very very usual that I don't have has to do with the vision some people really struggle to not see well and to have different impairments to their Vision I don't have this so far but it's something that I hear a lot from others around me so this is the important thing if you hear someone says I have a mess first of all for some people it's easier for others it's harder but no matter what it comes with a luggage and the big luggage already is the shock the shock of this diagnosis the shock of the unknown the shock of not knowing what is going to happen tomorrow will there be a cure will there be a better medication will my body deal well with this medication my biggest learning is that we can endure a lot more than we think so many times I have heard people tell me how do you do it oh you're are coping with it so well and all of these things but I can assure you that many many times when something happens to us it's much easier to cope with it than we think we often think we're going to lose our mind our life is going to be over at any difficulty or at any permanent change but the truth is that we can endure a lot and physically and mentally and emotionally and the second learning is that we can impact a lot what is happening to us I will make another video of how I manage to control different symptoms and how I manage to eliminate them or to deal with them in a better way or in a different way so our body has a lot of power and we can change things it's not just oh this is my diagnosis these are my symptoms full stop not at all we have a lot of power and a lot of possibilities to impact our symptoms and to change them it's a journey that is long and it has a lot of milestones and moving towards getting worse but also moving back towards getting better I am better than I was of course this depends on some phases some phases I'm better than others but in general My overall physical state is much better than it was 22 years ago so I want you to be hopeful and to never give up to keep working I will make many videos also for physical activity I will share with you a lot of things that have supported me and also other people with a mess that I am supporting as well so we never give up we all know that Ms patients are Ms Warriors right we never give up we always find ways to feel better and if we cannot feel better to be patient to be patient that tomorrow it's going to be better we should never lose this hope if you have questions please don't hesitate to write them on the comments and I will answer you thank you so much for watching and all the best

Channel: Lucie Petrelis

Views: 5,524

Keywords: Multiple sclerosis, MS, Multiple sclerosis diagnosis, MS diagnosis, MS symptoms, living with MS, MS warriors, never give up, chronic condition, chronic illness

Id: Xk-qM7gzKEE

Length: 19min 59sec (1199 seconds)

Published: Tue Jan 09 2024