/ multiple-sclerosis

Another MS Update

Following on from the all change post, I recently had my first appointment with my new neurologist so now seems like a good time for an update.


The appointment was at the Salford Royal, the ride over was pretty straight forward with Google in my ear. Google only failed to tell me about one road closure which probably explains the lack of traffic... The appointment was at 9am so getting through reception was pretty easy. First they took my blood pressure and weight (68.6kg, still feel like I'd like that to be around 70-72) then they gave me two tests to help gauge my EDSS.

The first test was a 9 hole peg test which is basically put pegs in holes one by one and then remove them one by one. This was done for both hands independently. 27s for my right hand and 25 for my left. A quick Google seems to suggest that this puts me in the 71+ category for time taken although slightly faster than the average for MS patients. Swings n roundabouts eh? The second test was the 25 metre walk test which took me 15 seconds, not going to Google that one.

The EDSS that they gave me (I'd guess that my discussion with the neurologist also played into this) was 4.0 limited exercise tolerance - (walk) at least 500 metres unaided. Sounds fair enough to me. The actual appointment was good, we discussed history although Dr Pearson from Swansea had sent over 50+ letters that he's sent me/my GP in the past so the new consultant didn't need much from me there. We discussed things like walking, bladder, medication, all of the normal stuff and then did some quick tests. Tests seem to suggest that I'm slightly ataxic (lack of voluntary coordination of muscle movements that includes gait abnormality) and unable to tandem walk easily. Impaired coordination, brisk reflexes, all of the usual stuff...

What was of particular interest was that he bought up the subject of diet. He thinks that a low saturated fat diet is definitely a good idea, as well as low salt (obviously). He thinks that vitamin D supplementation is a good idea and has requested my GP prescribes me tablets for it. He's also arranging a referal to a urologist which should be interesting.


My legs are not holding up so well is the short version of this. I've noticed pretty significant degredation over the past 12-18 months. My ride to work is ~4 miles and the ride home is slightly uphill most of the way, I'm usually pretty wobbly when I get off the bike at home. My neighbours must think I'm always getting pissed at work.

Walking is also impacted, I'm generally OK up to about 1.5 miles but after that things get a bit wobbly and foot droppy. The wobblyness is a combination of leg strength dropping off and losing balance. The current heat isn't doing me favours there either, I fell over just walking along the pavement yesterday due to foot drop. My legs also hurt a bit/ache pretty much all of the time but I think that's my fault for forcing them to walk and ride a bike...


My bladder is not good, however management of it is very good news. For quite a long time I've been (with hindsight, quite badly) managing my bladder when it comes to travelling or meetings etc... mostly through dehydration and Tena men. Before moving I attended a couple of interviews in Manchester and just didn't drink anything from 8pm the night before until I got home after the interview which was usually mid afternoon. Even then the plan wasn't fool proof and it was all pretty stressful. I was a lot more concerned about getting to interviews than having interviews.

So what's changed on this front? I think that the right place to start is why. When looking at jobs I had commuting with a faulty bladder in mind and wanted to be able to work from home a couple of days a week to make it a bit easier. This meant that I had 3 rules on top of the job sounding good and being exciting. These rules were: 30 minutes max by bike, shower on site (for when things didn't go to plan), and work from home a couple of times a week. I'm not sure who I was trying to kid but commuting would have been pretty terrible regardless.

In the end I took a job with Couchbase who are great, the work is very interesting and they're pretty flexible. The Manchester office is also under 30 minutes by bike. However, just before I started they asked if I could spend my first week in California as there was an SDK team meeting there so it'd be good if I could go (turns out this was an excellent catalyst for me). They were good about my answer of maybe. Maybe actually meaning there is no chance that I can manage that. I explained why it was maybe and was told to take a bit of time to make sure I could manage it. I did really want to go, it was a great opportunity, sooo...

I sought help from the NHS. I rang the continence team and the same day they rang me back and arranged to see me straight away (working < 5 minute walk from the hospital helped there). I'm retaining 160ml+ so the nurse introduced me to sheath catheters (also known as condom catheters which might help to understand what they are), which have been a game changer for me. Within 2 days I'd been able to find the product that worked best for me and them make me a prescription which is pretty great. I was able to go to the states no problems and can commute without worries too. I've even used the tram a few times. It sounds way over the top but it has been life changing for me.

On top of the sheath catheter I'm also using an intermittent catheter before bed which has made a big difference to being able to sleep through the night. I've written briefly about these before when I couldn't get them to work. This time it's a different product but the idea is still the same - insert, drain, remove. The catheter is basically a 40cm long tube, 40cm! It allows my bladder to fully drain which means less getting up during the night. I did also try using it in the morning but as soon as I drink something then I start retaining liquid so it was pointless.

All in all, I'm still riding, able to work and in some ways in a better way than my last post about this 6 months ago. The foot drop that I had then recovered over the period of ~a month and now tends to return if I push my legs too hard or drive for too long. Both of these things are generally pretty easily managed.

Another MS Update
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