The Final Verdict
After I’d had my Intravenous Steroid treatment in hospital I was allowed home, I couldn’t wait to be back in my own bed, watching rubbish TV, seeing Ryan and my son again, it had been nearly a full week.
Ryan came to pick me up with our very own wheelchair we had bought from the internet, he had sent me a video from home of all the manoeuvres he’d mastered in it while he was waiting for me to come back, so it was no surprise that one of the black caps had fell off the foot plate when he arrived to collect me.
That wheelchair!! I hated it from day one, I’ve always been very independent and stubborn to say the least and I just couldn’t get on with it. I think I’ve only used it about 3 times in total to this day, Ryan got more use from it than me. The only time I ever remember being outside in it is one I wont forget quickly, Ryan being Ryan though pushing a wheelchair was a lot like pushing a pram!! You don’t need to wait for the drop kerb you just fling it on to its back two wheels and over the kerb you go, that made it the second time I’d come close to death within a few months. He was banned from ever taking me out in it again! The day I struggled with that wheelchair through the house and petty much threw it into the conservatory was a great day!
But being back home was lovely, I was still very wobbly on my feet, needed help up the stairs, into the kitchen, anytime I moved really and I was always so sleepy but it was so nice to be back. Eventually the letter came for my full body scan at a different teaching hospital about 30 minutes drive from home. Ryan drove me there and I was a little apprehensive as I’d had 2 MRI scans up to now but didn’t really know what to expect for this one. I was told it would be an MRI brain, eyes and full spine all in one go. Would the machine move around me? Would I need to change position? Did I need dye injecting into my veins? I wasn’t sure but I was to find out.
Anyone that’s ever had an MRI scan will know it is extremely claustrophobic. I didn’t know this the first time I ever had one, but you lay down on the machine bed, they pop you some ear phones on (I would never tell them this but they are pointless the machine is just too loud) and then they put a metal cage over your head and screw you into the bed!!! Like something from one of the SAW movie. Once that’s on you cannot physically move your head, they pass you what looks like a small stress ball with a cable connected and ask you to press it if you need anything at all and in you go! Hellish is a good word I’d use to describe it. That was the first MRI I had and for the whole 40 minutes I felt as though my heart would leap out from my chest and run off, away from this crazy machine, I pictured it like Forest Gump not stopping until it was far enough away, the relief when it was over was immense.
So from that first scan I hatched a plan for my second one, I would close my eyes before they enclose me in the birdcage, so then when I get conveyor belted into the machine like a piece of luggage on an airport carousel, the last thing I would see is the big bright open space of the room. It worked! I was much calmer picturing myself on a beach and strangely enough at one part in there I had a full office desk set up on the left and a big open space on the right why?? I don’t know but it worked for me. Who wouldn’t want their office to be on a beach?
If only the full body scan was to go as smoothly, I went into the MRI suite, they were lovely they popped a cannula in, injected some dye all painless and fine then it was time to lay down… Still fine, I closed my eyes before the dreaded crate, had my stress ball and in I went. They’d told me before hand it was to be a very long MRI and just to see how I get on. It was to be 90 minutes inside that machine!!
There was no music that I could hear coming through the headphones probably because the sound is a little something like this, picture yourself laid on the tarmac on a main road and a team of about 100 highway maintenance come along with a mixture of, JCB’s, bull dozers, trucks, concrete mixers and a few hundred jackhammer’s all working around you at the same time, not in any kind of synchronised order, yeah I’d say its definitely like that. There’s no wonder I couldn’t hear what was probably Jason Derulo’s savage love playing, but then again that’s probably a good thing. The worst bit was yet to come I obviously had no way of knowing what time it was in there and how long I’d been in, I was wondering if we were almost done or if it had only been 10 minutes, my eyes were tightly shut UNTIL the radiographer’s voice crackled through my headphones and I almost jumped off the bed giving me a fright. My eyes popping open, I heard a little voice say, “Were half way through Deborah your doing well”. No, no, no!!! My eyes had opened I’d seen the cage and the walls of the machine centimetres from my face, they also put a little mirror in there. Why I don’t know??? It’s not like I could do my make-up to pass the time. I’d also seen my eyes staring back at me and the look of complete horror in them, all in a split second. Damn it! My heart began to pump and my breathing got faster and deeper, you begin to think all sorts of crazy things when your screwed into a magnetic machine which you couldn’t get yourself out of with the best will in the world, I remember thinking if there was some sort of mass emergency and the staff had to decide whether to help me out of the machine and perish or run for it… I wouldn’t blame them to be honest, go against ethics and save yourselves, but this was not the right environment to be having these thoughts! Stop it! I did somehow manage to get through it and when it was finally over and I was rolled out I sat up and looked a little bit like the GIF of the fox that gets sent around a lot with its paws between its legs and looking utterly shell shocked.
After the scan a few days passed and I received a letter to say I had a telephone appointment with the consultant, Great! I knew he would definitely have the scan results for me but I wonder what else he would tell me? I’d only actually been diagnosed with Intercranial Hypertension at this point, the words Multiple Sclerosis mentioned twice in conversation but nothing else. One part of my story I’m glad I stuck to was not Googling Multiple Sclerosis although I’d heard of it I didn’t know very much about it and didn’t want to bombard my brain even more than it already was so I stayed away. Good job really as we all know you can google ‘Why has my toenail fell off’ and three pages later you have a terminal diagnosis and should start arranging funeral plans, best to stay away until you have a specific reason to search.
That day came on Thursday 16th July 2020. Waiting for the call had been unnerving (mind the pun), the phone rang, I had my piece of paper and pen ready for anything he would say. The results of my MRI were that there was still active inflammation on the brain, the brain stem and down my spinal cord!! Wow I hadn’t expected that. but would explain the backache, would also confirm that I didn’t in fact have cross eyes, I suppose that’s what you get from having a social distanced eye examination, maybe the optician should have gone to Specsavers 😉 The consultant asked me how I’d been feeling and I told him the symptoms were improving slowly but improving non the less, there were a few symptoms I had that I don’t think I’ve mentioned on here before they were, left sided facial numbness, completely deaf in my left ear which turned out to be ok in the end because if I slept on my right I didn’t hear a thing, not even Ryan’s snoring!!My tongue was also numb and could make swallowing difficult at times if you didn’t time it right with liquids and I had this strange electrical buzzing down my spine when ever I bent my head forwards, I’ve come to learn that is has a name Lhermitte’s (or barber’s chair syndrome) but they were improving, I told him I was doing more around the house cooking, hoovering etc, now I don’t know if the silence was a good thing or not but he said next “You must take it easy and not be doing too much”, damn that independence and stubbornness of mine! I should say here that I didn’t write that bit down on my piece of paper, nobody else had to know, if I felt like hoovering I was going to hoover. Then came the part I’d tried to tell myself I wouldn’t hear, the month leading up to that point I’d thought many of times, I bet they’ve got it all wrong, I wonder if they’ve been looking at the wrong scans, I bet its all to do with the Intercranial Hypertension and I’ll need regular Lumbar Punctures and all will be fine, but no here it came as I was sat looking out of the bedroom window with my mobile to my ear …
“If the circumstances were different (Coronavirus) we would have met in person today for this appointment, but I need to use this opportunity to diagnose you with Multiple Sclerosis (Wham! Bam! Thank You Ma’am) we as a team here and at another hospital in the country have looked over all the results and have come to the same diagnosis.”
I think the phone call ended there for me, more was said for another 5-10 mins after that but I’m not really sure what it was about. I don’t remember if I cried there and then after that call but I think a little part of me knew deep down maybe even from the very beginning that there was always a chance it could be that…
I’m not sure how many days past but the day did come where I put on my big girl pants and said “come on then Google…give me all you got” and I opened up the laptop!!
Any terms your unsure of please look under info and medical terms in the main menu.
The follow on blog coming soon…
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