Back to square one

Just like the election of a pope, or the announcement of the winner in some Saturday prime time family entertainment bollocks, I expect you’re all on tenterhooks wondering which disease modifying medication I’m going to plump for.

I don’t know 100%, but here’s my quick notes so far (apologies for superficiality):

Beta Interferon (Rebif, Avonex, Betaferon, etc)

– It’s a no for this as I’ve just given it up after six years. It made me extremely depressed – see Beta Interferon Blues.

Glatiramer Acetate (Copaxone)

– a big possibility. The only things against it are the injection site reactions and the daily injections.

Teriflunomide (Aubagio)

– no greater relapse reduction than copaxone, I think, but with a few extra side effects such as hair loss, gastric nastiness etc

Fingolimod (Gilenya)

– a risk of some heart problems, including arhythmia and in extreme cases cardiac arrest. Also a risk of macular oedema in the eyes. It’s a no to this as I’d rather eliminate the risk completely.

Alemtuzumab (Lemtrada)

– It’s a no to this as it can make you vulnerable to infection. I am married to a teacher and I have two primary school age children. I also spend a lot of time with my hands in the earth on my allotment. I’m exposed to a lot of infections. Also there could be blood clotting and thyroid issues. Once you have the infusion, there’s no going back – it’s not like you can stop taking it.

Natalizumab (Tysabri)

– The brain disease PML is documented among Tysabri users, but thankfully extremely rare. I think I would only be eligible for this if I had extremely active MS anyway. I don’t fancy having infusions every four weeks – they’re not something I can do quickly and easily in the comfort of my own home.

Dimethyl Fumarate (Tecfidera)

– this is my number one choice. In trials it has reduced relapse rates by something like 45-50% and is delivered twice daily in tablet form. There are gastric side effects – nausea, diarhoea etc, but I’ve done my homework and there are coping strategies and the nastiness should wear off over time. Worth a try, I thought. There’s one little drawback: it hasn’t been approved by NICE yet, so isn’t available to NHS patients at the moment. A decision is due in August according to the NICE website.

So there you go… I have more reading to do, but at the moment, it’s Dimethyl Fumarate first, and if that doesn’t work out Glatiramer Acetate is the fall-back.

I had a wobbly moment while talking to my better half last night (lost my balance slightly as I turned round). I think she’s worried that I’m not on any meds at the moment, but I think I would’ve done that anyway. I guess whatever medication I choose doesn’t guarantee a long term improvement in conditions.

No knee nonsense

I have no idea whether this is MS or not, but every now and then my knee gives way.

And I don’t mean every day. The last time it happened was two days ago, and before that it was last week sometime.

It’s happened a handful of times recently, though, and it’s a new sensation, which makes me automatically assume it’s MS.

There’s no pain. I can be walking along feeling relatively normal when suddenly my left knee will disappear. Somehow it instantly loses the strength to hold me up for a fraction of a second and I’ll stumble.

I haven’t made a note of how often it occurs, so I thought I’d document every time it happens here with what I was doing at the time.

Of course it may not be MS at all. I might just have a crap knee.

Probably the very act of writing about it will make it go away completely.

Hairy Angels (!)

Well, I’ve just had the stomach bug that seems to be going around.

This bug floored my kids a week or so ago and put my eldest off her food for two days which is no mean feat.

It floored me too, but not in the way it floored my wife, who is still having trouble keeping things down two days later.

I was sick only the once, but because my better half seemed to be worse off than I was and because it was a nice day, I looked after the kids while she got much needed rest.

Halfway through the morning I realised that I wanted to curl up and go to bed. I seemed to be made of concrete. I felt dizzy and my eyes kept going flickery. My head was buzzing. I eventually lost the feeling in the little finger end of my left hand. It even felt like little worms were trying to weedle their way out from under my eyelids. More MS symptoms than typical stomach bug symptoms, I think you’ll agree.

But I carried on… I managed to do some gardening with little rests between each task… ie. between each bulb I planted.

I even managed to carry out a conversation with my elderly neighbour who stood on her tip toes to talk to me over the fence, while I was slumped in a garden chair feeling the vomity knot building in my stomach.

It was only after my sickness became physical (to put it politely) that I called in the help of my mother-in-law who descended in a welcome whirlwind of helpfulness.

I managed to put the kids in the bath and their respective beds and saw to whatever my wife needed before her fitful night’s sleep. I then got the sofa bed ready downstairs and flicked on the telly.

I don’t know what it was. Maybe it’s because I had the grand total of four slices of toast to eat all day (two at breakfast and two as a putting out the sofa bed celebration). Maybe it’s because you’ll watch anything on telly when feeling under the weather. Maybe it’s because they appeared on the cover of MS Matters magazine and I felt like they were friendly spirits warming me with their gentle geordie bonhomie… But I really enjoyed losing myself in the bellies and beards of the Hairy Bikers.

For those of you outside the UK, the Hairy Bikers are an amiable pair of large (let’s be fair – chef-sized) blokes on motorbikes who travel round observing how local foods are prepared and having a go themselves, while swapping matey banter with each other and relevant onlookers.

Nibbling at some cold hard toast and butter and sipping from a glass of water, whatever sumptuous strudel or interesting bread the hairy bikers were cooking (they were biking round Austria) – this is what my toast became.

When they came across a man with a gargantuan grey beard, seemingly sticking out at right-angles to his chin, dressed in lederhosen caught in the shadow of yet another generous belly, and dropping the odd yodel into his broken English, I was there with them, feeling a little better about my belly and admiring the view from the top of his alp.

The Hairy Bikers to me were like my guardian angels motoring into my MS addled evening.

And after they had motored off, my eyelids drooped and I snuggled down for the night.

One fit of fever in the early hours and I reckon the illness was purged from my body. The next morning I was weak and hungry and craving strudel, so I braved adding marmalade to my toast pick-me-up. And all was more-or-less right again.

This leads to a question that has intrigued since diagnosis…

My sickness bug departed in less than 24 hours, but wiped out the rest of my family for at least 48 hours. As MS is a disorder of the immune system, does this mean I have a particularly killer immune system? I always seem to avoid being ill, while my wife and everyone else I know seems to pick up everything. I have about one head cold a year for instance, and that will be on a bad year. Also, I’ve noticed that my MS symptoms will be bad on a particular day and this will tend to coincide with when those close to me are suffering from whatever ailments are going round. I wonder what other MSers have experienced.