Tag Archives: neurologist

Take Control, Know Your Choices

1MSg logoThis week is MS Awareness Week and a campaign is aiming to reach the one in five people with multiple sclerosis who are not in contact with specialist services

A multiple sclerosis (MS) awareness campaign, called 1MSg, has launched recently urging people with the condition to ‘Take Control, Know Your Choices’.

The campaign, funded by Biogen and developed alongside clinical experts, comes in response to research which highlights the need for patients to regularly engage with MS-specialist services.

Previous research conducted by the MS Trust, found that nearly a fifth of people with MS had seen neither an MS-specialist nurse (MSSN) or a neurologist in the past year, and so will not have received the comprehensive annual review recommended by the National Institute for Health and Care Excellence (NICE). In addition to this are those patients not currently known to MS-specialists due to not being in contact, those ‘lost to follow-up’.

To help address this issue, the 1MSg campaign highlight the benefits of regular and quality engagement with MS-specialists in order to ensure that people are making informed decisions about their disease management based on the latest information, under the guidance of experts.

The progression of MS can be unpredictable and can vary from individual-to-individual, and therefore monitoring is important.

Dr Martin Duddy, a Consultant Neurologist specialising in MS, said: “I’m supporting the 1MSg campaign because I believe that there are people in the UK living with MS who are not seeing an MS doctor or MS nurse regularly, and who would benefit if they did. The way we manage the condition has changed a great deal. This includes the support services we offer, how we control or treat symptoms, how much we understand about the disease and its progression through technology such as MRI, and what we’re able to offer in terms of treatments to help alter the course of the disease.

The advent of DMTs, I think, has induced a lot of hope in people with MS. In the medium-term, within the UK, we’ve been collecting evidence on whether we see a disability reduction and that is coming through at six and eight years now that people who are on the drugs are not as disabled as they would have been if they hadn’t taken them.

We’re looking long-term, and worldwide, to collect better information about the 10, 20, 30 year outlook, but the first principles in science and some of the early data would suggest that treating the disease actively at an early stage does prevent some of the later disability, so I want to encourage all people living with MS to regularly see a member of their local MS team.”

To learn more, visit www.1msg.co.uk where you can access a wealth of information and hear advice from healthcare professionals, including Dr Christian Jessen, about the importance of engaging with MS-specialist services. You can also watch a video explaining more here.

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The Un-Signposted Road

signIn the three years and two days since I was diagnosed with MS, I’ve been waiting for A Sign.

Something huge, massive, with the words ‘Congratulations! You’ve made it through! Life Can Now Return to Normal!’

I thought, ok, if I go through the five seven twelve stages of grief and adapting to MS, I would pop out the other end ready to pick up the threads of my old life. I would brush myself down and carry on regardless.

Only three problems with that: my old life no longer exists, MS is a bit bigger than I gave it credit for and there won’t be a sign.  I’ve come to realise that there simply isn’t an end point, it’s a continuous process, so I might as well just get on with it (note to self). Quite possibly I’m stating the obvious and am a bit late to the game.

Looking back, I think I was a little guileless about the whole thing. I used to think A Sign could be:

  • When I would no longer spend an evening bemoaning my fate and crying into my wine, Morrissey playing on a loop in the background.
  • When I didn’t reach for the MS Nurse Relapse Hotline every time a tiny new symptom appeared.
  • Ditto, I wouldn’t endlessly google every tiny new symptom which would bring up a list with not just MS but every other horrifying illness on the planet and subsequently I would go to bed crying (see first point).
  • When I wouldn’t quake with fear when meeting with my neurologist as I would be semi-fluent in long MS medical words.

Nope. Well, of course they all count towards some kind of acceptance of my weird and wonderful new life with MS, but it’s not the whole picture. MS has a funny way of tripping me up, literally.

Take the other day. I woke up, put the kitten out, put the kettle on and fell against the cooker. Gah. Later that day, I stumbled and whacked my arm badly. I had stranger than normal tingling in my left leg. My hand hovered over the MS Nurse Relapse Hotline leaflet. But, no, I put some Morrissey on, poured a glass of wine and settled down in front of Google instead.

I have therefore decided to count my blessings and enjoy my new life. The Teenager is thriving, my studies are going well, I love my job and, despite the occasional set-back, life is looking not-too-bad. Although I do wonder if my neurologist will have some pesky new MS words to slip into conversation the next time I see him, the meanie.

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Eyes Wide Open

Eyes wide openI have developed an annoying symptom recently.

Some evenings, when I’m reading a book or watching an exciting TV programme (Hannibal, Pretty Wicked Moms), I go from wide awake to instantly zonked.

No reprieve. It starts right out of the blue; my eyes start rolling and I’m pinned to the sofa, completely aware of what’s coming next – total oblivion. In that slim interim, I know I should get up and walk around, problem is I just can’t.

It’s suddenness is frightening. Apart from that, The Teenager sneaks downstairs and slurps down countless yoghurts while I’m in the Land of Nod. He probably also clones my credit card to buy online games, who knows?

Anyway, I had my review with the neurologist (a very nice man – *waves*) just over a week ago. When he asked me if I had anything I was concerned about, I launched into the saga of my numb big toe, my odd left foot, my odd right foot and this most peculiar Insta-Sleep (just add yawns).

He prescribed me Amantadine, warning me to take them no later than 2pm, otherwise I would be up all night – I wish. Yes, I was sorely tempted. But, I took them as instructed and nothing happened for almost a week. Then, blam, I was……awake. Fully. The grass was green and the bluebirds were singing. My life was suddenly in blinding Technicolor.

I worry though that the tablets mask the underlying symptoms. Am I pushing myself too far? Will I reach a point of collapse? Will this new-found energy enable me to exercise more? Bearing in mind that last Monday, the few squats I attempted with my lovely trainer led to four days of agony. I’m not joking. I walked up and downstairs at home like a crab, meh.

Also, the tablets have given me the most amazing dreams, so vivid that when I wake up in the morning I have to remind myself what is real and what is imaginary. I have the most marvelous conversations with friends and family, but I find out to my dismay that they are entirely one-sided.

I will keep trying with the tablets. I made the mistake of telling my boss. He offered to trade me two packets of Jaffa Cakes for a tablet. I wasn’t tempted. Much.

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My MS’s First Birthday

Carly's BlogCarly is my guest blogger today – she experienced her first MS symptom at just 17 years old and was finally diagnosed at 26. She has a wonderfully positive outlook on life. Have a read, she’s inspiring:

My MS’s first birthday, 4/02/14 (although like the Queen, it has two).

I always thought I was a bit odd. Things would happen, but I didn’t feel confident telling people, and anyway, the ‘things’ would go away eventually.

I was 17 when I had my first bout of Optic Neuritis, and I felt confident that losing the sight in one eye for 6 weeks was worth mentioning. After several visits to my GP and the opticians, it was put down to a migraine, and as I was currently studying for my A-levels, it made sense that it could be stress induced. Well, made sense to other people, unbeknown to them I wasn’t keen on education and spent most of my time playing pool in the pub near school, or doing extra shifts at work.

Anyhow, that’s not to be recommended. It was a couple of years later I had lhermitte’s sign and transverse myelitis, but this was put down to trapped nerves. And I was cool with this, and that’s how my life went until 15 months ago, when aged 26, my body just gave up on me. A couple of nights in hospital, an MRI and an LP, and I had a provisional label.

MS. That sounded pretty serious. Like many people, when I thought of MS, I pictured wheelchairs, walking sticks, and older people. I worked 60 hours a week, rode a motorbike, travelled, drove 30,000 miles a year, and walked my dog twice a day. However a bit of time on the internet, and I soon realised what MS was, what it did, how it manifested its self, and that I most certainly had it.

When I finally saw my neurologist two months later, on 4th Feb 2013, I was ready for the diagnosis, and left the hospital feeling lighter than I had in ages. This didn’t last, I was soon back on the rollercoaster of emotions, but people were there for me; my MS Nurse, MS Society forums and help lines and I won that battle. I know I’ll never win the war, but that’s OK

My nurse came to see me today (though I think she really came to see Ollie, my dog). We got on to my emotional/physiological wellbeing, and I can honestly say I am the happiest I have ever been. I work 40ish hours a week, the motorbike is being sold (but that’s due to a whiplash injury), I travel, drive 20,000 miles a year and walk my dog twice a day.

Last year, pre big relapse I cycled from London to Brighton. I know I am lucky, I’m still very able bodied, but I’ve also got a new outlook on life. I’m grateful for what I’ve got. I have days where I simply cannot do anything, when I get tired I drag my left leg and dribble (yup, still single!), I struggle getting my words out, forget what I’m saying and often what I’m doing. My left leg is currently on fire and the often visited toilet has relocated to the top of Mount Everest.

But, I have wonderful family, a job (and employer) I love, the most handsome dog in the world, and a small, but perfectly formed group of friends, and I intend to enjoy it for what it is, and take each day as it comes. There is that saying, ‘life is too short’. For me, life as I know it is short, but it is still life, and for that I am grateful.

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A NICE Setback

AlemtuzumabLast week NICE (The National Institute for Health and Care Excellence) gave their initial verdict on Alemtuzumab (Lemtrada).

They are unconvinced there is enough evidence that it will be ‘cost effective’ for the NHS to offer as a treatment for MS.

What this means is that although it is licensed as a safe and effective medicine for people with MS in the UK (and neurologists can prescribe it), without NICE approval, the NHS is not legally obliged to prescribe it to anyone who could benefit.

On the day I was diagnosed, apart from hearing that I had rapidly-evolving, or highly active MS, all I remember my neurologist saying was that if I had Alemtuzumab, it could potentially halt the disease progression for up to ten years.

At the time, I was having relapse after relapse, each one leaving me weaker than before. I was a mess, physically and mentally. My son was 12 and I feared for both our futures.

And having grown up being aware of my dad’s accelerated MS deterioration and early death from a secondary infection (he was 35), my mind was already made up. I signed up for two infusions, a year apart. I was incredibly fortunate to be in the right place at the right time.

So what’s my verdict? Alemtuzumab has been life-changing. It really did halt my MS in its tracks. I might still have the same symptoms I had before the treatment, but there has been absolutely no progression. No relapses. I still have good days and bad, but I know with certainty that good days will follow the bad.

Before Alemtuzumab, I was never in remission. Life was an endless string of relapses. Since the treatment, I have had the chance to pick up the pieces of my life.

And as for cost-effectiveness, what price a life? Apart from anything else, I now no longer need to contact the MS team on a regular basis. There are no trips to the relapse clinic, no steroids. But most importantly, I can be a real mother again. My son no longer lives in fear and I have the energy (mostly) to be there for him.

(The MS Society will be campaigning for NICE to overturn their decision and a public consultation is open until 9th January 2014)

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