@TJFulcher 

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TJFulcher

A little more about my journey to my MS diagnosis

At the age of 13 I met my first ever MS specialist after a diagnostician at a children's hospital had finally decided that, that was the diagnosis that fit best. I loved this specialist as he seemed very interested in my case because of the fact that I was so young. This was the longest intake appointment I have ever had and he just wanted to know everything about me especially when he found out that I was a twin. He never said that I had MS at that time but that he wanted to be my doctor and run some more tests on me before deciding on a diagnosis. I would have the relapse that would have me diagnosed in the summer of 1993. I had just graduated from high school and my parents were so proud that I graduated on time with all of the school I had missed due to having to have medical testing done during school time. I was sent to Europe for 2 weeks where I saw England, Germany, Austria, and France I don't remember much from this trip. On day 2 of the trip I had a grand mal seizure and spent the next four days in the infirmary trying to explain to the doctor that I was not epileptic. I came home and 2 days later after having seen my GP the day before to get an antibiotic I woke up at 5 am and could not talk couldn't get out of bed couldn't do nothing but cry. I somehow managed to throw myself onto the floor hoping it would wake someone in the house either my brother who's bedroom was directly below mine or my sister who's bedroom was next to mine. But to no avail my mom did come into my room at 7 with my antibiotic that I had to take and found me on my knees in a puddle of my own urine hanging onto my bed crying. She put the glass of water down on my dresser and rushed to my side (she was a nurse). She got down on the floor with me to try and find out what was happening or happened. I could barely talk at this point but I was able to make her understand that I had to go to the bathroom. She told me she would be right back and I heard her go and wake up my dad she just yelled: "Doug I need you it Toosje." I heard him walk down his flight of stairs to the main floor of the house and ask her what was wrong with me. She said she didn't know yet but needed his help in getting me off of the floor. Between the two of them they got me off of the floor and across the hall to the bathroom. My dad stayed right with me the whole time even though his eyes were closed when my mom pulled down my pyjama's so that I could sit down and use the toilet. She left me sitting there while she went and got me some fresh underwear and shorts to put on afterwards. Once they got me back into my bed she went and made a phone call to my GP. All I could make out from the phone call because my dad was trying to entertain me as I laid in the bed was that I was suffering from hemiparalysis of the right side slurred speech and difficulty breathing. The doctor said he would call back in a bit after he made some phone calls himself. My sister was told to pack a hospital bag for me she decided to be funny and hold up every article of clothing she was going to pack she was trying to keep me distracted from what was really on my mind. Finally the phone rang and it was our doctor calling back but I had to go to the bathroom. I looked at my dad and he knew what I wanted and asked me well do you think you can make it if it's just me helping you? I nodded my head yes so he had me wrap my left arm around his shoulder and he pretty much dragged me to the bathroom. I sat on the toilet trying to hear the conversation between my mom and the doctor. All I heard was: "No I'll drive her to Toronto myself she's already scared enough you call ahead I'll be leaving with her in an hour. She hung up the phone came into the bathroom put the shower chair in the tub called in my sister sent my dad to the store to buy some orange juice for me. Between my mom and my sister they had me showered and dressed by the time my dad got back from the store. I was sitting up in my bed with a plate and some toast that I was trying to eat when my mom noticed that I was having issues with swallowing. She took away the toast grabbed my medications the glass of juice that my dad brought in and had me open my mouth as wide as I could and she proceeded to throw each individual pill down my throat followed by a minuscule amount of juice just to make sure it went down. Shortly after that I completely lost the ability to swallow. My dad sat with me on my bed trying to reassure me that everything would be alright and that he wouldn't let nothing happen to his little girl. The phone rang one last time and it was my MS specialist this time asking my mom how long it would take her to get me to the hospital so that he could have some people there waiting for us. She let him know she would a half an hour to get me into the car and approximately 1.5 hour drive so we would be there in 2 hours. That drive seemed like the longest drive ever even though I slept most of the way. I remember when my mom pulled into the Emergency entrance there was an orderly and two nurses as well as my specialist all waiting for me. I of course had to use the bathroom as soon as they got me out of the car so the nurse wheeled me there and then took me to the area of the Emergency ward with all the beds. I was immediately hooked up to an IV, vitals taken while my mom filled in all of the admission papers. I had completely lost the ability to talk by this point so having people ask me questions that they wanted answers to was really upsetting me because I had the answers but couldn't make the words come out of my mouth. My mom finally came and checked on followed almost immediately by my specialist. My mom took over the question answering for me as it was just upsetting me something awful. My specialist did the usual thing checked my strength and reflex poked me with pins and used the tuning fork for feeling. He wanted me to try and talk but what I was hearing in my head was completely different than what was coming out of my mouth. I had to have a feeding tube inserted, I was on oxygen because my diaphragm was partially paralyzed as well. It took a whole lot of tests on my heart for them to decide it wasn't a stroke but they had to rule everything out one by one. After 8 weeks in the hospital I was starting to get back small things like a little bit of movement on my right side and I could sort of swallow again it wasn't perfect but it was something I was going to have to relearn just like talking and walking. My specialist finally came in with the test results we had been waiting for, for two weeks. He said do you want the good news or the bad news first I opted for the bad news. His bad news was that my soccer career was over. I thought to myself if that's the bad news what the heck could the good news be. He looked at me and said we finally have a diagnosis of MS for you we now know what's wrong with you and we can treat it accordingly. I had never felt so relieved as I did when he told me that because I could finally say this is what's wrong with me. I'm going to end this here now to keep you all from getting bored with this story. Until next time this is Toosje signing off
@MSAr

I read all your story very interesting Great that you’re still rrms and without treatment whats your strategy to keep on going without tmt.

@TJFulcher

This doesn't work for everyone but my mom taught me a long time ago that positivity is key in fighting off a disease like this and taught me to always remember that there is someone far worse off than me. I also think back to when I couldn't walk or talk and smile because now I am someone that is talking all the time sure it's slurred at times but I am always willing to repeat myself if need be. I also eat very clean and exercise usually twice a day and will occasionally take a day off it need be. I also never stop smiling because there is always in my head the one doctor who told me I would be dead by 40 or have a poor quality of life and well hell if setting world records is a poor quality of life then I will take it every day of the week. I haven't gotten to that doctor yet in my story he'll be mentioned in the next blog I do probably on Tuesday. Nothing feels better than proving a doctor wrong.