15 Essential MS Websites (2017)

 

  1. Barts MS Blog
  2. Multiple Sclerosis on Neurology Times
  3. MS Trust
  4. Shift MS
  5. National Multiple Sclerosis Society (US)
  6. Multiple Sclerosis Association of America
  7. Multiple Sclerosis Research News
  8. Multiple Sclerosis News Today
  9. MedMerits: Multiple Sclerosis Center
  10. Healthline, Understanding Multiple Sclerosis
  11. Multiple Sclerosis Society (UK)
  12. The MS Society of Ireland
  13. MultipleSclerosis.net
  14. Medscape Multiple Sclerosis
  15. Very well: Multiple Sclerosis

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

20 Best Personal Blogs about MS (2017)

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 by real people with real multiple sclerosis issues.

  1. Positive Living with MS
  2. Life with Multiple Sclerosis
  3. Ugly Like Me
  4. MS Ireland Blog
  5. Living Like You
  6. Tripping Through Treacle
  7. Overcoming MS Blog
  8. Enjoying the Ride
  9. An Empowered Spirit
  10. Lady with MS
  11. Wheelchair Kamikaze
  12. My New Normals
  13. Carnival of MS Bloggers
  14. You Don’t Know Jack about MS
  15. Broken Clay
  16. BHHWithMS
  17. MS Connection
  18. Love My MS Life
  19. Daves ActiveMSers Blog
  20. Everyone Here is Jim Dandy

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

MS Anxiety

image anxietyJust this morning I was described as an annoyingly independent and stubborn oddball.

I can live with that; I presume more people would agree.

What they do not know, however, is that for the better part of 13 months, I chose to hide a painful side of my emotional and mental frame of mind. In fact, I simply refused to give meaning to it.

MS-induced anxiety.

Hints were dropped here and there, but I never told anyone about the fear that gripped my throat every time excruciating, knifelike facial pain (trigeminal neuralgia) took hold.

When TN attacks, the area around my left eye and the inside of my left ear as well as the inside of my eye become target practice for lightning bolts looking for a different kind of light show. Or, the stabbing pain turns into rubbery, burning numbness.

Neither are favourable.

Every 5 seconds piercing pain would turn my lively chatter into silence, and fear would grow stronger as time went on because people began to notice my absence because I needed a quick withdrawal from the outside world.

Anxiety grew to the point where I would only go outdoors wearing earplugs and sunglasses, and when I had a few Kalms tablets under my skin. Also, as a psychological issue, the stigma surrounding mental health made it difficult for me to speak up. In addition, I was also clueless about the fact that MS and anxiety are linked, making it a mental health issue about a chronic, physical illness.

I was more than surprised, so, when I read that research showed that MS-related anxiety usually happens shortly after being diagnosed, while some doubt it does not result from the physical process of MS itself. Continue reading “MS Anxiety”

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The MS blame game

It’s been another fun week of sorts. One of those where you start with ten ideas and finish… None.

Zero. Zilch. Nul.

First I was warned by an astrologer – I know… what was I thinking – that I was about to enter the most significant period in my life. In fact, it would be so intense, that I would need to keep my eyes open.

Like… Wide. Open.

It didn’t finish there.

Oh no.

It would also be three months that would be immensely rich in chances and opportunities romantically; financially and professionally.

Sure.

I’ve heard that before.

Continue reading “The MS blame game”

Multiple Sclerosis Ireland & Novartis Blog awards!

My diagnosis taught me one thing: the notion that no matter what happens, life goes on. Since then, life became more imaginative, engaging and determined.

IMSM grew from the desire to convey optimism through writing in 2011. By sharing thoughts, hopes and fears, it turned into a “Hhmm… I can’t remember writing that!” mix of personal stories and info about MS.

15589510_10154370600359022_7296656978801808848_nThrough sheer luck of the Irish, I received an invitation to write for Novartis’s MS blog ‘Living Like You’ in 2014. Soon after, the Irish MS Society added my name to their list of writers to provide content for their own blog ‘MS & Me’ (not to be confused with the title of my own blog).

Winning awards was something we didn’t set out to do. But we did, eventually.

In 2014, ‘MS & Me’ was a finalist in the Ireland Blog Awards, alongside my own blog.

In 2015, ‘MS & Me’ won a silver award at the same Awards in the Corporate Best Health & Wellness category.

Continue reading “Multiple Sclerosis Ireland & Novartis Blog awards!”

Back soon!

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

In the meantime, why not catch up with these posts…

A powerful letter to my MS
Balancing life and a chronic illness
Ignorance
Humans Multiple Sclerosis
Paper dreams
UNCRPD, Ireland’s ten-year moral outrage
UNCRPD in Ireland – begging for changeWriting in diary


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

 

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MS Treatments (July 2017)

 First-line treatment

  1. 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
  2. Interferon beta-1a
    Avonex (Biogen)
    Rebif (Serono)
    An injectable medication, interferon beta-1a reduces inflammation, possibly through the reduction of T cell production and also reduction of inflammatory cells in the CNS. Like interferon beta- 1b, it is believed to prevent the crossing of inflammatory cells through the blood-brain barrier
    Injectable
    The most common side effects include injection site reactions and fevers
  3. Glatiramer acetate (Copaxone by Teva)
    This immunomodulator is used to prevent relapses.
    Subcutaneous injectable
    The most common side effects include injection site reactions, fevers, double vision, weakness, and swelling of the hands or feet
  4. Dimethyl Fumarate (Tecfidera by Biogen)
    This works as an anti-inflammatory by blocking cytokine induction.
    Oral medication
    The most common side effects include flushing, rash, and GI symptoms
  5. Peginterferon beta-1a (Plegridy by Biogen)
    Similar to interferon is believed to have an extended duration.
    Injectable
    The most common side effects include injection site reactions, fevers. and joint pain
  6. Daclizumab (Zinbryta by Biogen)
    This medication is believed to reduce T cells. The suggested mechanism is through binding to the IL- 2 T cell receptors
    Subcutaneous injectable
    The most common side effects include upper respiratory tract infection and skin rash
  7. Teriflunomide (Aubagio by Sanofi Genzyme)
    This immunomodulatory drug is believed to work by inhibiting the proliferation of T cells and B cells.
    Oral medication
    It may cause abnormal liver tests, flu-like symptoms, and thinning hair

Continue reading “MS Treatments (July 2017)”

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MS News: May 2017

Humans Multiple Sclerosis

18954622_1380643908694227_7932568550270617314_o.jpg

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 for newly diagnosed people. Her own diagnosis – raw, no counselling, no management plan or words of inspiration from others who already walked down the same path, was something she wished had gone differently. In short, Joan was looking for a sign of hope, and something “telling me how people can get on with living a good life and that it wasn’t the end.”

She introduced her Humans Multiple Sclerosis project to the Irish Minister of Health and received a small government grant to develop her original Selfie Book idea. Continue reading “Humans Multiple Sclerosis”

Oh my god, I am (so not) dying!

You know you’re on to something when you recognise your medical file from afar, even when it’s tucked between 15 other colourful medical records.

Sadly, this is a fact that even World MS Day on Wednesday, May 30th can’t heal. Nevertheless, as a global community of approximately 2.3 million people with MS, being part of the solution – a.k.a. spreading awareness and pushing for a cure – can be infinitely rewarding. On WMSD, I feel an even greater purpose to be part of that solution, whether it is by attending disability-related meetings and spreading the word afterwards, or simply by becoming more conscious of the problems people with MS and other disabilities are facing in the world today.

Continue reading “Oh my god, I am (so not) dying!”

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