/ multiple-sclerosis

An update for MS awareness week

It's been a couple of months since my last update and this week is MS awareness week so thought I'd write an update.

In my previous post I was recovering from a possible relapse that quite badly hit the use of my right leg and I had just been for a MRI scan. I've since had the results of said scan and seen my neurologist for a follow-up too.

Results of MRI and appointment

The results aren't actually written to me, I'm simply copied in on the letter that my neurologist writes to my GP. What does that matter? Well, it means that I can understand the joining words between the words that matter. I can understand the words like "and", I don't have a clue what things like "peritrigonal white matter" or "supratentorial lesions" mean. That doesn't stop me from Googling them to give me some vague idea though. I wish it did stop me, sometimes what I discover is really quite terrifying. That said, the results don't seem overall too bad to me. A new lesion in one of the areas responsible for cognitive function is what concerns me the most. I can handle losing the use of my legs (don't get me wrong that'd be utterly shit) but decline of cognitive function isn't something I like to think about.

During my appointment with the neurologist (a Thursday at 19:20!), we briefly discussed my recovery and he seemed happy about that. My recovery was pretty quick, from relapse to recovery was 3-4 weeks. As my MRI scans basically go 2017-2019 (so have a 2 year gap) it's not possible to say when the new lesions in my brain appeareed. He would like another scan mid 2019 to make sure that things are currently static so that we can see if the meds are doing their job. That scan will be neck and spine (possibly with dye) so could take up to 1.5 hours, fun! I've since had my second round of Mavenclad (possibly one of the first people in the UK to do so) so hopefully that'll do some good. It came in a box repeatedly labelled "cytotoxins", that was not concerning at all.


How MS is currently affecting me? I think that there's actually nothing in the way of new symptoms. I think that the strength and fatigue in my legs is slowly getting worse but it's hard to map that out as it's quite slow. It's really hard to remember "how were my legs 6 months ago?", unless something major happens then it's hard to say. The DVLA also cleared me to drive without a driving assessment so my neurologist must be happy enough that my legs still work. My bladder is slowly becoming a pain again, unfortunately the hospital can't fit me in for Botox until June but I think that I should be able to cope OK until then. I'm just using a lot of intermittent catheters and going to the toilet once in the night, which is still a huge improvement on the past 5-7 times.

Other stuffs

In other news, Elysia and I are buying a house. I'm assured that this is very exciting (I never got the hang of excitement, or enthusiasm). Currently we're in the seemingly opaque void where solicitors do "stuff". Hopefully they'll hurry up as our landlord also wants to sell so has given us notice!

We'll have a bit of land to grow veggies in and Elysia really wants to get quails for eggs too. The house was bought a couple of years ago and done up to a good standard before the sellers decided that they wanted to be nearer grandkids so there also isn't much work to do, which is nice. My biggest concern is that we've bought a house with stairs, we'll see how that pans out. My upper body seems fine so maybe I could fit grab handles to drag myself up the stairs if needed in the future.

My options for getting to work will be to ride or catch the train. I'll have to buy a folding bike for getting to work via the train (we'll be about 1.5 miles from the station and a bit of distance to the office the other end). I'm also going to buy another ebike, more of a hybrid style. Commuting 18 miles by bike is moderately worrying but it's a good chance to catch up with podcasts and get some head-space. It'll be nice in Summer, Winter might involve more of the train. Whatever happens, I won't be commuting daily anyway.

I'll also have a load more mtb straight from the door which is going to be good. Riding from the door was certainly a consideration for us buying a house as driving after a hard ride is basically a no go. It's definitely getting harder to ride, and to walk (and drive if it's a hard ride so I don't do that) after riding but I'm still getting out there which is the important thing.

The end

So in the theme of MS awareness week, I guess be aware of it!

edit: to be in the spirit of things my body seems to have joined in and I think that I'm having a small relapse. The left side of my body from the waist down seems to have increased sensitivity, which feels very strange. I don't think that this is a new symptom though, I used to get this feeling when I relapsed a few years ago.

An update for MS awareness week
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