I was meant to write this blog as soon as I was home from hospital.
The problem was, I just couldn’t find the words to describe what was happening. Everything was and still is, up in the air. I’ve been lost in a state of ‘the great unknown’ and my mind lately has resembled the old BBC test card.
I guess a good place to start is what actually happened?
I’ve had a pretty horrific MS relapse. It started out pretty normal, but I had to stop my steroid treatment as my annual MRI was coming up. I tried my absolute best to keep going without the steroids. My sight was already better and I just kept very quiet trying to rest as much as possible. But then my MRI was rescheduled and pushed back another 2 weeks. It was hell, and 4 days before my MRI after speaking with my nurse we decided it was best that I start the steroids again because as it stood there was no way I could even make the appointment in Southampton. At this time my walking and weight bearing was bad. I was on both crutches but really struggling to keep myself up. I was falling and collapsing left right and centre too.
I made the appointment, even though on the ferry over I had a phone call from them saying both machines had broken and they would have to reschedule. After telling them I was already on my way they said I could sit and wait, but luckily just as I arrived the engineers had got one of the machines working, and I was seen straight away.
A few days later although my sight was 99% back my body gave up. And I mean really gave up. Suddenly not only was I unable to walk but I wasn’t even able to stand. I called my GP and they came out to my house straight away, before I knew it I was in an ambulance on the way to hospital.
After a brief spell in A&E I was transferred to MAU where I told them about what my consultant had said to me a month prior. She mentioned the new treatment Campath as we’re querying whether or not Tysabri is really working for me. When I next relapsed she would try and admit me to Southampton, investigate and go from there. While I was there I was trying to keep in touch with my consultant but there is no signal at all. My nurse came to the rescue and at 6am one morning managed to pass on my consultant’s number. Later that day a bed became available in Southampton and off I went by ambulance (just missing a trip by helicopter which I was actually pretty miffed about).
I was there for nearly 2 weeks, and it wasn’t a nice experience but we did find a lot out. Well kind of.
I saw my consultant and she ordered numerous different tests. Very calmly she explained that my symptoms suggest that it’s something and not necessarily just my MS playing around here and that she wanted me to see Rheumatology urgently. When you have one inflammatory disease it makes you prone to getting others. My hip X-ray was done that night and I also finally had a spinal MRI a few days later which showed what I knew all along, that I have lesions on my spine as well as my brain. When my consultant saw me again she told me that two of the lesions on my brain have actually shrunk so wants me to stay on Tysabri for the time being. The rest of the tests weren’t able to be done and it was agreed that I would have them as an outpatient or I would still be in hospital and rehab right now.
I really didn’t want to go to rehab. I would have been more isolated than if I was in hospital. Thankfully by then my steroids had really started to kick in (It can take about 2 weeks to feel the full effect) and with that in mind I decided to push myself to get out of my wheelchair and learn to walk again. By the 4th day of trying I was waddling without any aid what so ever. I told everyone I would walk out on discharge and nothing was going to stop me.
They let me go home and things have really been a struggle. I’m finding that as the steroids are going out of my system now the worse I’m getting again. My walking is rapidly going down hill and the pain is horrific. I’ve had my appointments through, evoked potentials are next week in Southampton and as for Rheumatology after they told me the earliest the can do is the 30th of September my nurse kicked off and suddenly I’m now being seen tomorrow. She is also putting other things into place for me including a care manager and pushing my wheelchair assessment to be done ASAP. From what everyone is telling me, they think I have rheumatoid arthritis. It’s not definite, it could be other things which they will also test for, but this is the route they’re concentrating on right now. The more I think about it the more it would make sense. I can’t remember a time when I wasn’t in pain with my joints, even as a child but it was always put down to ‘growing pains’. I had to pack in PE in year 6 because of it. Since I have been diagnosed with MS I put it down to that, but my MS has never exactly been normal and this would explain it.
As I sit here right now it feels like my hips, ankles, wrists and fingers are all being stabbed. I’m exhausted with it.
Anyway my heads gone blank again, so I shall leave you with a couple of vlogs from my hospital stay and some MRI images.