Blimey, this feels a bit like a newsletter, but I think there’s a few updates and loose ends on recent posts to tie up, so here goes:
I have my first official batch of fampridine to help with my mobility. As mentioned before, I hadn’t really noticed how much it was helping me walk until I finished my initial trial, after which my legs felt like they were wading through treacle. I’m on doctor’s orders to go out for a walk every day to build bone strength and I’m doing that daily at dawn. I’ll just be waiting to see if I can increase my current walk distance from one and a half miles, up to the Fampridine trial record distance of four and a half miles per walk.
Also, my previous post on this matter mentioned that I hadn’t noticed any increase in walking speeds when I was on the drug, well that’s obviously not the case to me now as I’ve certainly noticed a very marked decrease since coming off it.
Update: It’s 24 hours after my first official dose of F, and while my step count didn’t increase by very much on the walk this morning, I did feel a bit more mobile today, like I’d had oil squirted in my hinges.
Ocrevus and MRI scans
I’m still on Ocrevus as my main disease modifier and I’ve now had dose number 3. My MRI scan showed no new disease activity in the 12 months leading up to it, so it’s doing its job and keeping my internal terror cell in check. So, good news there.
Back fractures and painkillers
It turns out that it could be the fampridine giving me back pain and not what I had naturally assumed were my fractured vertebrae. Now I’m back on F I’m wondering if the pain will return, and whether I’ll need the use of the prescribed painkillers I had before.
Osteoporopolis and Mr T
I still need to have a chat with my GP to discuss potential reasons for having osteoporosis of the spine, but one thing it isn’t down to appears to be anything hormonal. According to a blood test, Mr T was here hiding in the corner of my Osteoporopolis flat all along, so I do have some company here, although he’s currently beetling his eyebrows at me and calling me a fool.
I’m taking the calcium, the vitamin D, and dropping a tab of acid (alendronic) in the nightclubs of Osteoporopolis every week, so I’m still doing my best to build that skeleton back up again.
I’ve volunteered to be a test patient in my local teaching hospital.
This means sharing my experience to medical staff at all levels, answering questions, and acting as a test patient to student nurses and doctors. I’ve had an initial phone interview and I’m expecting to hear back soon about when I’ll be deployed and what I’ll be expected to do.
I see it as a chance to give something back to the NHS after all the years of care I’ve received, plus it’ll get me out of the house and keep me out of trouble etc.
After too long a break, I’m sharing a house with cats again. Two rescue cats, discovered with the rest of their litter living on a wasteland in Mansfield. A brother and sister that follow me everywhere, and despite coming from Mansfield, are super-affectionate and are bringing a lot of joy into my life
On the evening of the day I had my Ocrevus infusion, before it got dark, I witnessed a meteorite break up in the atmosphere. It lasted about 2 seconds, flashed white like a magnesium burn and broke in two as it descended. If I was superstitious, I’d say that it was an omen of some sort; if I was the ultimate cynic, I’d say it was the infusion messing with my head. It’s not either of course.
Thinking about it now, it doesn’t seem real, but I reported it straight away to the UK meteorite and fireball network, or whatever they’re called, and as someone who’s analysed meteorite fragments under the microscope at university back in the day, I’m just happy to have witnessed what is likely to be a once in a lifetime event.
Healthcare professionals I need to big up
There are two key figures in my healthcare that have gone out of their way to reassure and rehabilitate me recently:
The first shout-out goes to my neuro-physio. I can’t say how much she’s done for me, but I feel more balanced, literally, since our first session pre-covid. I’m finally off her books now but she’s seen me through some dark times and has been the most holistic healthcare professional I’ve ever had, even asking about my kids and what they’re up to.
The second shout-out goes to my local pharmacist who rang me to find out how I was getting on with the bisphosphonates (I’m getting on fine with them and I’ve managed to incorporate them into my week with no hassle). He set my mind at rest though and when I asked if I’d be able to build bone back up and reverse those declining T scores, he answered “absolutely you can!” which is exactly what I needed to hear. He also told me about a former colleague of his (another male, but younger than me) who did exactly that. He also said I could give him a ring and talk medication anytime I wanted to.
So, two individuals, one in MS-ville and one in Osteoporopolis who stepped up to the mark when they were most needed. It doesn’t always happen, and there are one or two faces I can think of who need to up their game, but until that happens, I can thank my lucky meteorites these two individuals have blazed across my path.