Category: Tracking a Problem

Datum: Latest Parkrun result 33:45 (Best 21:56, Worst: 33:45 (14/7/2018))

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So today is an interesting day. I am starting on my drug treatment of Fingolimod tablets which, unless a new type of treatment emerges (very likely), I will now be taking for life. In theory, they are supposed to significantly reduce the number of relapses and keep MS issues at bay.

In the very short term (i.e. right now!), this involves spending a day being observed in the hospital day unit to make sure I don’t have an extreme reaction. In particular, there is about a 1:100 chance of having some form of cardiac response, which will then require an overnight stay. Apparently, they have given it to 200 people so far without any issues so I can’t see any issues there :-).

I then have to make sure I take the pills religiously for the next 2 weeks or else I will have to restart under monitoring again. After that, I can apparently miss a day but taking the pill will now have to be part of my new daily routine.

More broadly, as can be seen from the datum running time, things have not particularly improved symptoms wise. It’s a bit of a mixed bag but overall I am probably doing worse and not seeing the improvement I (we) had hoped for. This is a bit of a bugger.

My preference would be to have some idea where things are going to settle so I can build from that. However, I am beginning to suspect that the very nature of MS will exclude that.

The current status includes:

• I have stopped doing the 5km park run. It is pretty tricky to do and there is is a pretty high chance of injuring myself from falling over and/or having to overly compensate style-wise. It also knocks me out for the rest of the weekend which is not great. I am contemplating doing for the ‘tail runner” role which is basically just walking so might be doable.
• I have stopped drumming. Mainly because I couldn’t kick the base properly and my timing was out of whack. I might be able to figure something out for the former, and most probably don’t notice the latter, so that might come back.
• Mountain biking is under threat. I seem to be losing my leg “push”, so getting up the hill was problematic on the last outing.
• It looks like 2-3km is my comfortable walking distance. After that, I need to have a break.
• It is looking like an afternoon nap might become part of life.

Anyway, other than that life carries on and hopefully the new drugs will improve things somewhat.

UPDATE: drug monitoring over and no cardiac issues so far.

Datum: Latest Parkrun result 29:27 (Best 21:56, Worst: 30:38 (5/5/2018))

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This may be a short run thing, but I wondered if there was interest in following the progress of an illness.

Filling in some background.

18 years ago one of my eyes stopped tracking properly, which was slightly odd. It turns out that this is a common first presentation of Multiple Sclerosis (MS). After a week in hospital receiving steroid injections to dampen down my immune system the issue basically went away. As MS requires multiple presentations to positively identify I have been living with the potential rather than an actual diagnosis. Mostly this has been fine and has not affected my life in the slightest (although I have found it a convenient excuse for being rubbish at things like football :-)), but every now and then I would feel that things (movements, body responses, muscle spasms) have not been “quite right” and wonder if it was related. However, as there was nothing definitive nothing could really be done.

Until now

6 months ago I was training for the Queenstown half marathon and found that after 10km my right leg was not responding properly and would start dragging. Initially, I blamed being unfit although as per usual I wondered if it could be MS related. Sure enough, it happened in the event and I had to drag myself into Queenstown adding 40min to my best time and busting a big toenail in the process.

As Deborah and I have been doing the Christchurch 5km Parkrun on a weekly basis I have been able to keep an eye on things. I have noticed that the leg symptoms would arrive earlier and earlier, and naturally, my times were getting worse and worse. Finally, about 6 weeks ago the leg symptoms were basically constant and I was starting to notice small issues in my arms. I scheduled a meeting with a neurologist – John Fink. He was pretty certain that it was MS and an MRI scan later confirmed signs of myelin degradation (I will elaborate in another post what that is) which backed up that conclusion.

Treatment has begun and it turns out quite a bit has changed in the MS field in 18 years.

First, although steroids are still used to get MS symptoms under control, some bright spark determined that taking pills was just as effective as via IV. This has the added bonus of not requiring a hospital admission. In almost all cases this is preferable for the patient and saves about $10,000 to the health system! Alas, as well as the usual side effects of mucking up my taste buds, I had the unexpected addition of a drug reaction which involved feeling rubbish and coming out with a full body rash that took about a week to go away (see image). That has largely passed and I am now waiting for my MS symptoms to clear. This could take awhile as recovery time is roughly related to how long it takes the symptoms to develop.

However, already I think there is a slight improvement.

On a slight downside, since I have had a drug reaction, if I have to do another steroid round they will probably have to go back to an IV delivery and admit me to hospital.

The Second change is that in the last 3-5 years there have been significant advances in the MS treatment available. Essentially these are drugs that are taken for life and in many cases seem to be stalling the progression of the illness. Good news. Even better, although these are expensive, Pharmac are funding them if you meet the criteria. Apparently, I do.

While obviously happy about this, this is actually a bit sobering. Pharmac is reasonably rational and if they have determined that it is better to spend $20k/year for the rest of my life, as opposed to the future costs of letting the disease run its course, then things are pretty serious.

At this point the likely prognosis is that the symptoms of this episode will fade, I will go on the drugs, and from an external perspective life will carry on as normal. However, it is also possible that it could get worse.

To hold this narrative together I am giving a rough datum measure at the top of the post. This is my 5km parkrun time which Debs and I do most weeks. Running was an early indicator that things weren’t right and excluding other impacts (like age and having a craft beer bar open up around the corner from our house) this should give a rough idea of progress. If it gets back to the 22-23 min mark, I should be okay for most activities, although I would be best to try for PB’s sooner rather than later. If it gets to 24-26 min, I will probably have to abandon activities that require fine motor skills, like skiing and setting running PB’s, but should be okay for things like mountain biking. If it stays where it is at the moment then I will have long-term low-level symptoms. If it gets worse then I might have to organise a working bee to build a wheelchair ramp to access my house.

Watch this space.