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    You are here : Home » Get Involved » MSRC Interactive » Tysabriģ User Diaries » Georgina's Tysabri Diary

    Georgina's Tysabri Diary

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    Georgina

    First symptoms, Summer 06.
    Diagnosis, December 10th 08.

    It's easy to look back over the previous number of years, and then see that certain situations slot into place with my present diagnosis. I got my first symptoms half way through a shift that I was working. My vision began to go blurry and almost as if it was in slow motion, I looked at a menu, and I could see double the amount of text than there should have been. That summer I also had an MRI scan because I was beginning to get very frequent headaches, to the point where I'd be thankful if I didn't have one. I was also suffering from clear mood swings and anxiety. The scan came back as clear so they put my vision and headaches purely down to stress and tension and sent me off with a bottle of pills. Over time the headaches cleared themselves and then would appear again for a few more weeks, as if they had a mind of their own and the pills were doing nothing.

    About a year later I was sitting in the kitchen and I felt a sharp pain the lower part of my back, almost like an electric shock. I woke up the next morning with a numb hip and thigh. Over a period of a few months the loss of sensation would change to being overly sensitive. This feeling was beginning to spread to my other leg. The sensation would come and go, so I didn't give it a huge amount of thought.

    I went to the Doctors a number of times to try and sort it out, they said that I had one leg longer than the other and my spine was slightly out of alignment, which can play tricks on the nerves, which may have been what was happening. This at the time didn't seem unlikely as I had knee problems at a younger age that was caused by the same problem. So they just set me a course of physio.

    In the summer of 2008, a few more symptoms were beginning to arise. When I'd wake up the morning, the ends of my fingers would be tingly, and they'd slowly begin to come back. I was struggling for breath on a couple of occasions, when I was just sitting still. I would mention these things to my Mum, who would listen, but neither of us acted on it until a number of things were clearly not right. This was largely down to the amount of panic that my first scan had caused over my headaches, it was stress that we had created ourselves, and weren't going to do again unless there was an obvious reason to do so.

    After the Summer I arrived back to school for my final year. I was finding it increasingly more difficult to keep up, I was becoming more and more tired as the weeks went on. My legs were becoming weaker and were giving way on several occasions. On one of these occasions, I climbed out of the car in front of school and my ankle gave way so I slumped against the tyre and burst into tears, partly out of embarrassment, partly due to panic. My balance was becoming more of an issue to the point that I'd have to use furniture to navigate my way around. My legs were becoming stiff, making mobility more challenging. My bladder was now becoming an issue, I was a lot more urgent and frequent, contracting UTI's on a regular basis. I was also beginning to slightly drag my right foot.†

    I then headed straight back to the Doctors who then referred me to a Rheumatologist, who then referred me to a Neurologist, who sent me for an MRI scan. The scan came back with clear inflammation dotted in a few places up my spine and in my brain. I was then admitted to hospital that week to conduct further tests. I had a number of blood tests and a lumbar puncture. I went back for my results on December 10th, which came back as MS. In a way, I was relieved, I spent the day on a high† due to the euphoria of knowing what I was dealing with, and had my 18th Birthday party 3 days afterwards. I then had 2 relapses between then a January 17th (the date of my first Tysabri infusion). I had steroid treatment for both, which seemed to work wonders even by the next day.

    I seem to be having a few more symptoms since having my last relapse, such as; a tingly face, spasms in my legs arms and neck, my eyes twitching, constipation, tremors in my hands, feeling an MS hug for weeks at a time (which I have found seems to come hand in hand with sometimes struggling to breathe), and slight problems with swallowing and speaking.†

    All of my symptoms have a habit of appearing very subtly every now and then. But Tysabri is having such a dramatically positive affect on me, to the point where I can get up at a sensible time most mornings and go about my day without having any dramatic obstacles to over come.

    Of course, sometimes you want nothing more than for it to just disappear. But you find ways of dealing with issues don't you. If you have to, you're going to. You manage the situation as best you can, I'm definitely still learning, and probably always will be. But at the end of the day, in a way, I'm actual thankful for being faced with a challenging situation, it's given me the drive, ambition and determination that I needed.

    Georgina

    9th January 2012

    Well itís been a long old time since I wrote on here! And there I was convinced that I would keep everyone updated with my monthly infusions but clearly time just got away from me!

    WELL! In just under 2 weeks time, I will be having my 40th infusion. As if time has gone that quickly! Reading through my previous entry it has bought things back to me that I had completely forgotten I once experienced. I suppose this a really good thing! I am currently half way through writing my dissertation so am living in the library, but usually I make it to the gym about 3 or 4 times a week these days, and run 6 or 7 kilometres whilst Iím there, bit of a difference eh! I donít think I had even started uni when I wrote that old entry, and now Iím in my final year. It has been a long hard slog, and Iím only really beginning to get into the swing of it now, better late than never! I definitely wasnít ready to face uni looking back on it, but I donít think Iíd ever have been ready really so Iím glad the whole fresher thing is done and dusted and in the past. Being stuck at home would have just forced me into thinking about my situation far more than is healthy.†

    I am on a series of medications currently, including; lactulose, sertraline, nortriptyline, nitrofurantoin. Bowels, depression & anxiety, neuropathic pain, bladder, in simple terms! I have very few symptoms in comparison to a few years back, which is pretty much entirely down to Tysabri. The only symptoms I deal with daily is numbness, pins and needles, ever so slight weakness in my left leg (but not noticeable to the eye), and a right eye twitch (which is also subtle). The symptoms that still affect me are the ones I am on medication for. My anxiety has got worse over time but the difference is that I am in a much more positive place mentally and am able to see more clearly, so I am receiving Cognitive Behavioural Therapy for this. My bladder is so much better than it was 3 years ago although it is still my most prominent symptom. I have tried every medication going in the attempt to improve it, however none have made a difference. So after careful consideration, I am booked in to have botox within the next couple of months in the effort to improve it.

    I am now also visiting the Multiple Sclerosis Therapy Centre in Nottingham on a regular basis which was originally due to me wanting to meet people with my diagnosis to help contribute to my photography work at Uni. But I have found myself getting ever so attached to the place that I am now just going to be a helping hand and to hear peopleís inspirational journeys. I might even be giving the oxygen tanks a go for my new years resolution!

    I am 21 now, and have very much grown to become comfortable with who I am. Multiple Sclerosis has giving me the opportunity to gain the self-awareness much sooner than I ever would have done without it, and for that I am so thankful.

    So I am happy to report that I everything has moved so far forwards that I donít even recognize that nervous 17 year old that I once was!

    If you would like to get in contact with me to have a chat or anything at all, please donít hesitate to get in touch! You can find me on facebook by searching my name, or alternatively my url; http://www.facebook.com/mason.georgina

    George x

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