Category Archives: Symptoms and Treatment

Apr 17 2015
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Symptoms and Treatment

Things That Go Bump In The Night

rashThe boss has had a lot of fun this week, pointing at me, saying ‘ewwwww’ and ‘commiserating’.

Not the foot-drop, the fatigue, the red face or dropping my buttie. Nope, something spectacular and brand new.

I have broken out in a humungous rash of blisters, all over my arms and neck. And ears. Ears! I now have Spock ears.

For some bizarre reason, unknown to MS or the thyroid problems, I have erupted in icky, hot, itchy blisters. Even The Teenager is impressed, which takes some doing.

One GP appointment later, I am back on a course of steroids (meh), plus steroid cream, plus anti-histamines. In the back of my mind, I’m already calculating how much energy these tiny innocuous tablets of Prednisnolone will give me – skirting boards? Spice cupboard? Dusting?

I look awful. The boss likens me to a post-apocalyptic zombie. The blisters itch and burn. I slather steroid cream on them and pull  my sleeves down in shops.

I was back at the doctor’s today, where he posed me in several ways, taking great shots of the rash to send off to a skin expert. Then it was off to the endocrinologist for a follow-up appointment as my thyroid has gone haywire since Alemtuzumab. To be fair, I knew all about the risks and was more than willing to sign up. It just so happens I was the one in three.

Anyway, the endocrinologist told me that my thyroid was going crazy again. In the back of my mind I’m thinking, ‘hmm, weight loss?’. ‘Yes please’.

The upshot is, I have to let them know when I feel a kind of manic energy again, with palpitations. And tremors.

The joy. On the one hand, the slump of MS combined with the up of thyroid. It’s making me kind of confused.

Up? Down?

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Mar 17 2015
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Symptoms and Treatment

The One Where I Have a Non-MS Symptom

cowboyBizarrely, after a couple of weeks struggling through some kind of random MS flare-up where I’ve experienced every symptom I’ve ever had and then some, I am overjoyed to have something not connected to MS for once.

Before MS, I was pretty healthy (apart from being slightly Rubenesque) – never really had colds, coughs or flu, never had ear infections or a sore throat.

Never blagged days off school as a child, something I often recite to The Teenager when he attempts his best ‘sick-face’.

Now, however, I exist in an odd state of constant observation, or ‘MS Watch’ – did my foot drop that teeny bit more than usual? Why am I walking into walls again? Will the vertigo give it a rest? Will I ever be able to eat spaghetti or use chop-sticks in polite company again?

Anyway, I officially have … stenosing tenosynovitis (impressively medical-sounding), otherwise known as trigger finger (not so impressive and it makes me sound like a cowboy). Ok, so not the most glamorous of ailments, but boy, it hurts. I wake up every morning having to unclick one of my fingers from a weird bent position and throughout the day the pain gets progressively worse.

After months of putting up with it, the pesky finger showed no signs of improvement and, as my hands play up already, I took myself and my finger to my GP after having a chat with the nurse when I was having my monthly Alemtuzumab blood test. Trigger finger plus hands that just won’t do what I tell them to is dire.

My GP was, as ever, fabulous. I explained my frustrations, held out the guilty finger and felt a bit silly. She’s referring me to the trigger finger expert, so fingers crossed (minus the dodgy one) it should be sorted.

As an uncanny aside, I know MS is not contagious (of course), but is it possible for people to experience ‘Sympathy MS’? My long-suffering friend and boss appears to be exhibiting more MS symptoms than me at the moment. He trips over everything, he knocks his coffee over, drops his Jaffa Cakes and generally makes an MS-pest of himself.

Today, he dropped his pasty on the newly-installed radiator in the conversion we’re doing. When I stopped laughing (it took a while), he said, ‘bit strange, but I’ve got this weird pain in my finger, like it gets bent and hurts to unclick it’.

‘Oh, really?’

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Mar 11 2015
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Symptoms and Treatment

The Day Baked Beans Made Me Cry

bakedYou know that whispered word, beginning with an ‘R’ and ending in ‘elapse’?

Well, I’m not sure if it’s a flare up or the dreaded ‘R’-word. Whatever it is, it’s awful.

It started over a week ago with the usual brutal, gatecrash-entry that MS specialises in.

A sudden, total collapse in energy, not seen since 2011. Garbled speech, crazy balance and a sense of being utterly spaced out; so much so that I have now nicknamed myself The Space Cadet.

Just to make things even more interesting, I’m having weird jolts of vertigo. Not continuous (I can just about cope with that), but sudden, horrible shifts in my vision, like a camera-shutter adjusting itself rapidly (younger readers, you may have to google this).

And if that wasn’t bad enough, I’m now feeling nauseous every evening.

Oh, and one more thing. The bizarre crying. I cry at everything. A piece of music, a random comment, the cat running up my curtains. And baked beans.

That was the final straw. Who on earth cries when they make baked beans on toast?

The Teenager had requested this particular meal choice when I was writing the shopping list for the week, a monumental task. So, great. Easy, fairly healthy, quick.

On the fateful evening, I assembled everything and served it up. I looked at the plate and burst into tears. The beans just looked so … sad. So vulnerable and innocent and somehow, a little bit lonely, even though they were surrounded by other beans. It was then that I realised I needed professional help.

So I called the MS team this morning and left a rambling message. I had a call back soon after and blurted out my tales of woe, capping it off at the end with, ‘and apart from that, I’m fine!’.

The Teenager is away in London this weekend, so maybe I will have some time to gather myself together before I go back to hospital with my Baked Bean Saga. How embarrassing. Kittens, babies, parcels tied up with string I can understand, but baked beans? I have a feeling I’ll never live this one down.

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Mar 09 2015
6 Comments
Symptoms and Treatment

A Private Affair

privateIn the UK, NHS doctors and consultants practising privately can be a contentious issue.

The usual arguments:

it costs the taxpayer £610,000 to train every doctor (based on newspaper reports), it’s a drain on resources, they’re trained at our expense in the UK then move abroad, you can book to see the exact same consultant privately within a week, rather than waiting six months on the NHS.

I admit, pre-MS, I thought the same, despite having had a step-father who was a doctor.

Now, I’m adding up the cost of my MS to the NHS:

  • The consultations with a neurologist
  • The Alemtuzumab treatments (plus overnight stays in hospital)
  • The appointments with the MS nurses
  • The appointments with the MS bladder specialist
  • Several trips to Accident and Emergency
  • The appointments with the neurology physiotherapists
  • The MRI scans
  • The blood tests (every months for five years after the last Alemtuzumab treatment)
  • The consultations with the thyroid specialist
  • The appointments with my GP

For this, I have paid nothing. Not a penny. I am not a tax payer right now – being a divorced, single parent for the last 15 years has meant low-paid jobs below the tax threshold but allowing me to be available 24/7 for my son.

So when I was concerned with how my MS was developing last year and, too impatient to wait for my NHS appointment several months away, I booked to see my neurologist privately. I don’t have money to burn – and my mum split the cost with me.

It was the best money I ever spent.

I had a whole hour to talk about everything. My neurologist simply does not have that time allotted to be able to do the same for every patient in the NHS. Say for example he has several thousand NHS MS patients on his books in South Wales. Not forgetting the other illnesses he specialises in. The figures just don’t add up.

Ultimately, I have only paid that sum for my treatment, in over three years. And for that, I am grateful. In the grand scheme of things, it is a truly insignificant amount to what I have received in return – thousands and thousands of pounds.

Since then, I wonder why more people don’t book in privately, at least once. And before they say it’s unaffordable, think about it. Add it up – we don’t know how lucky we are in this country.

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Feb 24 2015
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Symptoms and Treatment

Pass Me The Spanner, Numpty

beautifulA most interesting day at work, what with the higher dose of Pregabalin settling down – it was a bit like ER, with The Builder subtly creating all the drama:

‘Spanner’

‘Yup, Boss.’

‘Snips.’

‘Yup, Boss.’

‘Hammer.’

‘Yup, Boss.’

‘Tape’.

‘Well, I have The Best of The 80’s?’ or ‘Simon and Garfunkle’.

‘Plumbing tape, you numpty’.

‘Yup, Boss. Just joking.’

And so it continued. I floated around, munching on granola bars and slurping endless cups of coffee (mine was the pink ‘Hello Kitty’ mug, the Boss got the ‘Mr Busy’ one). I seem to be having a mini-relapse since upping the Pregablin dose – my hands moving a few seconds too late or too early, feet not moving properly or dragging, dropping things and generally feeling spaced out.

A few hours later, we wrapped it up and I was dropped off at home.

The most important thing is, my nerve pain has been reduced drastically and it’s a feeling that goes way beyond relief – the nagging, crawling, aching pain in my legs every evening, making the smallest tasks impossible, has been knocked back down to just my feet. Which isn’t brilliant, but a whole lot better than before.

I can now stand up properly when The Teenager gets back from school, and look semi-parent like. I no longer lie on the sofa all evening, dreading getting up. I can read a book without the constant, nagging pain pulsing away, ruining everything.

The downside is I still feel as if I’m trapped in a marshmallow cushion. I can’t concentrate. I am very, very slow. Everything is now somehow wondrous. When I cooked pesto pasta for The Teenager this evening, I spent an inordinate amount of time just staring at the sauce after I took the lid off. So green, so pesto-y, so, well, wondrous.

I’m sure it’ll pass and my mind will realign itself with my body again (by the weekend, PLEASE). But for now, as my body refuses to do what I command it to and my mind is somewhere completely different, I will make the most of stopping to pick up leaves from the garden, turning them over and marvelling at their unique patterns, and allow myself to admire the beautiful, brown, shiny spheres that are … Maltesers. Beautiful.

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