Background

Hello welcome everyone so this could be the boring post but I started this to get my story out there so I thought I would add a bit off background so you all know my story up till now. It all started around September/October 2011 when I got the flu and was bed ridden for about 6/7 Days as the flu cleared I noticed some stiffness and pain in my back and my knees I didn’t think anything off it at first I just thought it was wheee I had spent so long in bed with the flu but as time went by it was getting worse so I went to my GP who referred me to a rheumatologist who said she thought I had juvenile arthritis but I would need an MRI to confirm it by this time it’s 16th January 2012 and I’ve just proposed to my fiancée she obviously said yes and I’m over the moon It’s one of the best days of my life so far I step outside for a cigarette when I get a phone call from my mother who had just had a phone call from the rheumatologist with the results of the MRI she told my mum it’s not juvenile arthritis but there are signal changes in my brain which indicates MS and she wants me to see a neurologist within the next 7 days the big day arrives the appoint with the neurologist he confirms it it’s MS my first thought was ‘I’m spending the rest of my life in a wheelchair’ but I put on a brave face and ask him is there any treatment to which he refused to give me as I was to strong as I walked everywhere and proceeds to tell me I’ve got a good 10 years before I need any treatment so I get on with my life until around April 2014 when I come down with vertigo and a Inner ear infection and a relapse which made me bed ridden for 6 weeks I see my neurologist I ask him for some steroids for the relapse and he refuses and said I done it to myself for not having any treatment even though it was his fault I had no treatment for refusing me it in the first place so I left the room and I just cried and I turned to my mum and said why doesn’t anyone care why doesn’t anyone want to help me to which my mum went back into the room with the neurologist and had a go at him and he then agreed to let me have IV steroids. I had the IV steroids in June 2014 it slowly started to work and by the end of July 2014 I was walking again independently which is great because I was due to move into a new flat with my fiancée and our wedding is booked for November I decided to go to a different hospital to get a new neurologist it’s gets to around September 2014 I’ve just seen my new neurologist surely this one is going to help me right? Nope he tells me there no treatment for me as it has progressed to secondary Progressive MS and I will never walk again this was without any MRI or anything this is my first appointment with him and what really took the biscuit was when he then sent a letter to my GP asking to start me on Anti-depressants as I seemed ‘a bit low’ when I left him I really wasn’t keen on him but it was ok cause we finally have the keys for our flat So I would be moving out the area I can get a new hospital and then I had a massive argument with my fiancées father and the wedding gets cancelled moving in to the flat is cancelled my fiancée stuck by me which I’m grateful for but the argument has caused another relapse and I’m unable to walk unaided again so I decided to go back to the original hospital and hoped for a different neurologist lucky I got one a really good one who got me on treatment straight away she tell me I have to have an MRI within a week because I need to be on treatment “like yesterday” so I have my MRI a day later and within 2/3 I am starting Tysabri I am excited it was one of two drugs I wanted when I was researching the treatments within 7/8 months of Tysabri I am starting to walk around the house independently the drug is working but unfortunately I am constantly ill with infections where the Tysabri is lowering my immune system I am also starting to get severe anxiety and struggling to travel to the hospital and back as well as being hooked up to the infusion pump so around March/April 2017 I had to give up the Tysabri it’s making my MS better but my overall health worse and my anxiety got to much I couldn’t handle it i was really worried about coming off because I had heard about the rebound relapse when stopping Tysabri but I was fine I had 3 course of steroids between stopping Tysabri and starting my next treatment Tecfidera great the second one I wanted when researching the treatments I was excited again I started that on the 18th June 2018 and by the 22nd June I was told to stop it by my neurologist and MS nurse because of the effect it was having on my body it left me unable to move my legs at all i haven’t had any more treatments since then other than courses of steroids which I believe is at around 14 courses now. I was meant to start Gilenya around May 2019 but due to personal reasons I decided against it so my neurologist suggested Mavenclad which became the third treatment I wanted once it was released for use i actually took delivery of the drug on Friday 2nd August with a view to starting Monday the 5th August but unfortunately I have come down with a severe relapse which again has left me bed ridden so I am on steroids again so will have to push back starting my treatment unfortunately as again I am really excited about starting it! So there’s my story so far sorry it’s so long and boring! Keep well everyone!

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