Understanding clinical trials

A clinical trial is a research study in which volunteers receive investigational treatments under the supervision of a physician and other research professionals. These treatments are developed by pharmaceutical and biotechnology companies who select qualified physicians, also known as investigators, to conduct clinical trials to determine the benefits of investigational drugs. Clinical trials are usually […]

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United

What do you think about this Tuesday thought, “Life has too many twists and turns?” When MS is your sidekick, you certainly understand the concept of the ‘before-MS’ and ‘since-MS’ time in your life. In that brief moment between both, life as you once knew it had all but disappeared. Many wondered how to bridge […]

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The truth about Cinderella

Some days I  go through life like a half-baked version of Cinderella. There’s promise at 8 AM, but by 11 AM my fairytale book is closed until further notice. In the background, that all-important clock keeps ticking forward, but my body is in a rut: sleeping, eating, exercising, resting, more eating, more sleeping and back again. And […]

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Do I have stupid written on my forehead?

Can you recall what life was like before this craziness started? Nope? Neither can I. There is a bit of mental derailing going on right now. Fatigue is back with a vengeance. I am so excellent in not sleeping well, that when I do, it’s a reason to organise a party, or rather, a pyjama […]

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Something’s on the way!

When you’re standing in the shower and you get a fab idea to write about, but can’t remember what it was 3 minutes later… Something’s in the works, and it’ll be posted here by the end of tomorrow! In the meantime, why not catch up with these… The five-second MS rant Magnetic voices MS Anxiety The […]

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The five-second MS rant

Girl sad on a rock

When physical restraints curb your potential, you realise that you want so more from your life. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential.

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Magnetic voices

Life with MS is about adaptation. What you can do, however, is listen to the voice of reason, no matter how hard it might seem. It might say that you will need time, rest, medicines, a decent medical team and a seriously good dose of positivity to go through life.

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15 Essential MS Websites (2017)

Laptop pen and paper

Barts MS Blog Multiple Sclerosis on Neurology Times MS Trust Shift MS National Multiple Sclerosis Society (US) Multiple Sclerosis Association of America Multiple Sclerosis Research News Multiple Sclerosis News Today Healthline, Understanding Multiple Sclerosis Multiple Sclerosis Society (UK) The MS Society of Ireland MultipleSclerosis.net Medscape Multiple Sclerosis Very well: Multiple Sclerosis Non-existent link © Willeke […]

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20 Best Personal Blogs about MS (2017)

Writing image

Personal blogs are a great way to get to see what is hiding behind the mask of life with MS. While each person with MS is different, writers often connect with readers on a shared human level, away from hospitals, neurologists and other physicians. These are some of the best personal blogs in 2017, written […]

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MS Anxiety

Research shows that MS-related anxiety usually happens shortly after being diagnosed, while some doubt it does not result from the physical process of MS itself.

Not so fast, buster!

I begged to differ.

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The MS blame game

Earlier this year, my right eye behaved erratically because of a significant amount of stress that led to ongoing optic neuritis. My eye doctor recommended several times that reducing stress levels as well as cutting back on laptop, smartphone and TV use would be beneficial.

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Multiple Sclerosis Ireland & Novartis Blog awards!

I believe it’s fair to say so that the ‘Living Like You’ as well as the ‘MS & Me’ writers share the same gratitude. Being nominated by the public means you are owed a big thank you for not just having our back, but also for sharing our words with hundreds of people. Your voice – though often unheard – means that MS isn’t a lonely illness, but a shared concern.

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Back soon!

Writing has been a bit slow lately. New content will find its way to IMSM soon!

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MS Treatments (July 2017)

 First-line treatment Interferon beta-1b Extavia (Novartis) Betaferon (Bayer) The first drug that was approved for treatment of MS, interferon beta-1b inflammation in the central nervous system. Injectable The most common side effects include injection site reactions and GI symptoms, such as stomach pain, constipation, and diarrhoea Interferon beta-1a Avonex (Biogen) Rebif (Serono) An injectable medication, interferon beta-1a reduces inflammation, […]

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MS News: May 2017

Research worker

2017 Meeting American Academy of Neurology (AAN) Aubagio in people at risk of MS Cladribine Gilenya Lemtrada long-term data Lemtrada and black people Opicinumab Siponimod Importance of early effective treatment NEDA challenged Measuring disease activity in progressive MS Predicting risk of conversion to SPMS Risk factors for MS in children and teenagers

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Humans Multiple Sclerosis

When it comes down to awareness-raising and thought-provoking initiatives in the health charity sector, fresh ideas are often hard to find. Not so for Joan, a dear friend of mine. After her original Selfie Book idea created by her regional MS branch for World MS Day in 2015, Joan wanted to expand this Facebook idea and create a book […]

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Oh my god, I am (so not) dying!

Life with MS can be awkward. It can be puzzling. It is unquestionably easier said than done. It’s the little things that are happening inside your central nervous system that can make you stumble as if your body reinvents and transforms itself without your consent as if the ‘old’ you is suddenly not good enough anymore.

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Paper dreams

Have you ever wondered, “What exactly is my purpose on our little shining blue ball floating around in our vast universe?” Have you? Congratulations, so have I! It took me the better part of my teenage years to get to the stage where I thought, “Yes! Eureka! Yes, I found out what I am doing […]

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Injecting object

Originally posted on Ireland, Multiple Sclerosis & Me:
Injection needle, fridge. Taking out another pre-filled syringe to ward of future multiple sclerosis relapses. To others? A scary thing, a daily habit they could not fathom. To me? Now, the fluid of my life. For my life. It feels cold in my hand, but warm to…

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MS News: April 2017

Research worker

The latest MS news about clinical trials, research, treatments, mental & emotional health, diet and lifestyle, including highlights from Barts MS Blog

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Jammed filter!

Just forgot image

I didn’t dumb down, I just kinda go dumber depending on my physical state of being before regaining some speed again.

My neuropsychologist pointed out that sometimes, my ability to handle particular mental tasks may skip the F1 pole position, but that brain training was a great way to stop the decline.

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MS News: March 2017

Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017 Society Releases Statement on American Health Care Act National MS Society Urges Lawmakers to Oppose American Health Care Act Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part […]

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Balancing life and a chronic illness

Oh, you can bet I am willing, I am usually more than willing. When physical restraints curb your potential, you realise that you want so more from your own life, and out of your own reality. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential. It simply reminds you that being chronically ill sucks.

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UNCRPD, Ireland’s ten-year moral outrage

Having a neurodegenerative illness that cannot be cured has given me the best gift I could ever ask for, strength and meeting the most inspirational and brightest people with disabilities in Ireland and abroad. Yes, they might “be different” in the eyes of many, but they showed me that not everything in life has a price or a tag. They taught me that disability is about misinterpreted ability because they help other people with or without disabilities within their communities in a time when their government shows signs of deliberate discrimination.

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0% responsibility – 100% accountability

Today, I joke about not being perfect or about my mind behaving like a repetitive software update that refuses to stick after a few busy days. I may add that my bones rattle and that I have a Club Med-type relationship with three different hospitals, my primary care physician and my pharmacy. Or, I forget my name, fall asleep at fancy receptions, need an hour to cut three peppers and two onions and sometimes need to nag to myself to get things done.

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MS News: February 2017

February’s news about MS treatments, research, clinical trials, lifestyle choices, what if Obamacare is repealed (Affordable Care Act) and much more!

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Single and chronically ill?

Couple holding hands

You can channel your inner delightfully, dazzling diva while wearing pyjamas, dog-shaped winter socks, leg warmers and your turban hair towel.

You can drag your duvet to the living room, watch Romeo + Juliet and cry for an hour afterward because Leo died when he shouldn’t have (Damn you William Shakespeare!)

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UNCRPD in Ireland – begging for change

Over the years, many extraordinary, inspiring people with disabilities have shown how they have rocked the world in their unique way. What the likes of Trump might regard as incompetence, I have seen extremely able, courageous people who have raised the bar not only for themselves but for others as well. They are living proof that having a disability is not the end of the road. There is, in fact, a whole world ahead of you. It might be good to remember these strong words from Michelle Obama, “When they go low, we go high.”

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