Blitzkrieg

One of the things my brand new neurologist did for me when I met him earlier this year is confirm my diagnosis of restless legs syndrome (RLS). It’s something that I’ve been wondering about, on and off, pretty much since diagnosis, so it’s ‘nice’ to have it confirmed.

It’s not a symptom of MS, but there’s a higher incidence among MS patients than the general population.

In fact, what I assumed was leg cramps associated with the MS is actually RLS.

Where it has been an inconvenience before, it has suddenly decided to ramp things up a notch or two. Instead of an uncomfortable build-up of tension in a calf muscle followed by my leg clenching (bad enough), the build-up is leading to a muscle explosion. Don’t forget that, along with most others with the condition, this happens in the early hours of the morning.

It really impacts on my quality of life, and on Mrs Dave’s too when I wake her up with it.

Over the years, I’ve tried different meds (Gabapentin, Amitriptyline, Baclofen) to smooth it out but been flattened by the side effects instead. I ended up ditching Baclofen last year after increasing the dosage to a level that I really wasn’t comfortable with before the initially calmed legs started playing up again.

The last ditch attempt to do something about it came in the last week or so when I tried rotigotine patches that the neuro had suggested. At a higher dose they’re normally prescribed for Parkinsons patients, so they’re a pretty serious drug.

My word they worked!…

…they worked for three whole days. For three days I was restless leg free.

Bliss!

I mean, I woke up in the morning feeling nauseous and headachey as side-effects of the rotigotine, but that’s still heavenly compared to the daily blitzkrieg of RLS.

I could still feel that something wasn’t quite right; there was still a little bit of tension build-up, but not enough to cause distress or explode in a massive leg spasm, more like a stiff leg. But then, after sitting down yesterday evening to watch TV, it returned – bang! – out of the blue.

I wondered if it was a one-off and made sure to do some stretches before bed, but it came back with a vengeance at 2am.

It feels a little bit like I’ve kidnapped my neighbour’s barking dog and dumped it on the far side of town – just far enough to hear it at night in the distance – and now it’s found its way back home.

So I’m feeling quite glum.

My glumness has been compounded by restless leg message boards which state that it’s a common occurrence with this disease. It gets blasted with medication and then decides to go “f**k you! – I’ll show you what happens when you try to fight me” and then untangles its way out of the medicinal straightjacket you tried to put it in.

Restless legs can be so distracting that I’ve even had fantasies of blowing my head off with a shotgun when it flares up at the end of the day when I feel fatigued. Thank crikey for British gun laws as these aren’t light-hearted fantasies in any shape or form at all. The rotigotine prescription is pretty much the final straw medicine-wise, as far as I can see.

So what can I do?

Before the patches, I’d called in on Holland & Barrett, after a discussion with the MS nurse, to see if CBD oil supplements and magnesium tablets might help (as suggested by some on MS message boards). They didn’t, but the CBD oil has helped a lot with balance and leg strength, to the extent that I really notice if I forget to take it.

So I’ve been down to Holland & Barrett again and I’ve stocked up on Vitamin D, because it’s MS innit? And we all know of the potential link between MS and vitamin D, don’t we? I’ve also bought some B12 tablets, primarily because I haven’t eaten red meat for 30 years and I think I probably need to supplement my diet with this, anyway.

I’m not giving up on the rotigotine yet. I’m going to see out the course of this set of patches before making my mind up, but as I’ve been typing this my right calf muscle hasbeen jumping.

Pass the parcel

A week or so ago, I stood at the end of my elderly dad’s hospital bed while he squinted at me and asked “Daddy?”

Just a couple of hours earlier, he’d been rushed from his care home with pneumonia and possible sepsis, and ‘conscious’ moments like this were fleeting and rare. A few days previously, he’d been wide awake, taking several attempts to record a wedding message for my niece. While my eldest daughter held up her iPhone, he amiably stumbled over the details. He managed it more-or-less in the end, with many a chuckle between takes.

I didn’t know either of his parents; both of them had lost their lives in the years before my birth. With my dad’s milky blue eyes struggling to focus on me, I suddenly recalled a photograph from the 1930s of my grandad playing with his son – his only child – in the sand of a Suffolk beach. It felt like he was in the room – a presence handing Dad over in a game of familial pass-the-parcel, saying “Here you go: We brought him into this world, you’re seeing him out.”

Since then, my dad’s rallied a bit. He’s responded well to antibiotics and he’s been moved into a ward with other semi-conscious old men. It’s still early days and he still has a mountain to climb. Whether that climb has an end point that involves falling off a cliff or dozing in front of daytime TV with his care home cohort remains to be seen but the latter’s looking more likely now.

All in all, Dad’s bucked the trend. His parents died in their 60s and he’s overcome a history of high blood pressure, heart problems, and more recently, diabetes and Parkinsons, to come within grasping distance of his 90s.

When he was my age, he was fit and healthy, a former cross country runner, and a fairly active dad with no apparent sign of the health problems to come. Of course, I can see the many parallels between the pair of us already – we both have a compromised neurology after all.

I know any straight comparisons between us will involve lots of negatives for me in terms of balance and mobility, dependence on catheters (a sure fire way to bring microbes on board), a now thankfully distant history of cigarette smoking (including the odd dodgy one), a desk job and the lack of exercise that comes with it, and the timebomb that is antibiotic resistance. I’m not 100% sure how my pescatarian diet and the fact that I have only a dash of semi skimmed in my tea and low fat marg on my toast offsets all that, but it might be high time for me to knuckle down and set about safeguarding my future.

It’s just that right now it’s impossible for me not to imagine a day when I might confuse my daughter for my mum.img065