I feel blessed. A strange opening sentence from an MSer but I’ve been very fortunate with my diagnosis and treatment. I also love this site as this was most definitely what I needed when I was first diagnosed in 2008. Unfortunately it did not exist then and my diagnosis and the following weeks were a very dark time in my life. I am pleased to say I’ve emerged from the tunnel smiling and have to say Lemtrada played a big part in that…
I suffered from numbness in my legs in 2007, which eventually went away only to come back in my hands in May 2008. I started under going a number of neurological tests and during that time the numbness came back in my legs. By this time I knew it was MS even though I’d had no diagnosis. There were other symptoms that I had diregarded previously but now made sense. I’d put my fatigue down to working too hard. I’d blamed my frequent trips to the loo on a weak bladder. Then I went to bed on September 7th feeling ok and woke up with no sensation from the neck down. I could still move my limbs but had absolutely no feeling. To have a shower I’d have to check the water with my face to make sure I didn’t scald myself and acually trying to wash was really difficult. Brushing my teeth was nigh on impossible and even drinking a glass of water or eating meals was tough. I became incredibly dependant on my fiancee to look after me. The only problem was she was eight months pregnant with our first child at the time. I should have been caring for her and instead she had to take care of me. It was an incredibly painful time and the thing that haunted me the most was the thought that my son or daughter could be born any minute and I wouldn’t be able to hold them or care for them.
I got the diagnosis a month later and luckily when my son arrived my sensation had returned and my relapse had abated. We were keen to hit the disease hard and I’d found out about the lemtrada trial (or campath as it was known then). I was entered onto the phase three trial. At the time I’d had three relapses in the space of 4 months, was suffering from significant fatigue, had varied sensation and the lasting impact of Uhttophs syndrome (meaning any light exercise or heat brought my symptoms back). On the Disability scale I scored a 3 out of 10. I went from being a very active and very fit sportsmen to being unable to run/jog at all – even a long walk was a challenge.
Fast forward 7 years and three doses of Lemtrada. I’ve made two positive career moves both of which have been steps up for me. I’ve got two great children and plenty of energy to play with them both. I’m active again and have played football again for the first time in eight years. I can run 5km comfortably with no symptoms. My bladder is the size of Belgium – well at least it’s allowing me to go out for an evening without spending more time in the loo than in teh company of my friends. And most importantly I have had no relapses.
There have been some challenging moments on the journey and for those of you who are about to be treated with Lemtrada I’m afraid to say the accompanying course of Aciclovir is my fault (long story for another time)! For those of you considering Lemtrada all I can say is that from personal experience it has worked wonderfully for me. The treatment laid me low for a couple weeks but that was a small price to play.
More than happy to answer any questions anyone may have but conscious that us-emma has already been doing a sterling job on that front 🙂
Finally I’d just like to say thank you for the team who created this positive, uplifting online sanctuary. I’m only in week three of the new job so all a bit hectic for me but once things setle down I hop to make a positive contribution on here.
I look forward to hearing your positive stories
Take care one and all
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