MS News: May 2016



  1. People with MS Share How They Are Stronger Than MS and Maintain Independence on World MS Day May 25


  1. Hebrew University and Aurum Ventures Team to Create a Diagnostic Blood Test for RRMS
  2. JC Virus Carries a Mutation in MS Patients That Amplifies Brain Disease Known as PML
  3. MS and Young Adult-onset Hodgkin Lymphoma May Share Underlying Causes, Study Says
  4. Gut Microbiota in Young MS Patients Is Higher in Pro-Inflammatory Bacteria Than Usual, Study Finds
  5. Sanofi Genzyme and Johns Hopkins Partner on MS Research Projects into Disease Progression
  6. Study of Immune System Response to Viral Infection Revives Possibility of Link Between MS and Viruses
  7. Gut Bacteria Affects Myelin Content and Induces MS-Like Depression in Mice, Study Reports
  8. Modern Medicine’s Promising Future for MS Treatment: Stem Cell Therapy
  9. Fluorosamine Seen to Boost Remyelination in MS Mouse Model by Blocking Scarring Molecules
  10. Combined Use of Imaging Techniques Allows Scientists to Peer Into Myelin Formation
  11. High Glutamate Levels in Brain Seen to Drive MS Progression
  12. MS Patients May Be Prone to Other Chronic Illnesses, Study Finds
  13. Key Pathway in Antibody B-Cell Production Identified, Important to Diseases Like MS
  14. Cognitive Difficulties Known to MS Traced to Problems in Nerve Cell Activity in Hippocampus
  15. Low Prenatal Vitamin D Linked to Later MS in Offspring

Continue reading “MS News: May 2016”

Positive MS News: April 2015

kinex-clinical-trialsResearch news

  1. Miconazole and clobetasol may be effective as multiple sclerosis therapies
  2. Drug Derived From Sea Anemone Shows Promise Against Psoriasis, MS
  3. Novel Drug From Nature Shows Early Promise
  4. ‘Brainbow’ illuminates cellular connections
  5. MS Association of America releases 2015 multiple sclerosis research update
  6. B Vitamin Promising in Progressive Multiple Sclerosis
  7. Phenytoin protects against optical damage in multiple sclerosis
  8. Could Eczema Cream Be Used for Treating Multiple Sclerosis?
  9. URMC Start-up Takes Aim at Memory and Cognitive Problems
  10. Controversial stem cell treatment for multiple sclerosis
  11. Key Cytokine Discovery May Shape Future MS Treatment
  12. The UpBeat: One of the ‘super heroes’ encouraged by promising MS research
  13. Drugs that activate brain stem cells may reverse multiple sclerosis
  14. Novel Mechanism May Prevent Onset of MS in Immune Cells
  15. French firm announces multiple sclerosis drug breakthrough
  16. A Missing Subset in ME/CFS and Fibromyalgia Revealed? Take the Disease Course Survey
  17. Stem Cell Transplant Reduces Multiple Sclerosis Disease Activity
  18. Seizure Medication Reduced Optic Neuritis In Multiple Sclerosis
  19. Tisch MS Research Center Of New York Reports Early Improvement In Stem Cell Trial
  20. Public Release: 22-Apr-2015 Researchers discover new drugs to combat the root cause of multiple …
  21. Progressive MS Pipeline Slowly Filling With New, Experimental Therapies
  22. Important Multiple Sclerosis Research Grants Announced
  23. Promising New Therapy for Multiple Sclerosis Based on Placenta Cells

Continue reading “Positive MS News: April 2015”

Life’s meant to be…

a4006188cbe835b3047be497c9442726What’s life if it’s not meant to be beautiful, or happy?

It’s not about scraping through, it’s not about being just half of who or what you ever thought you’d be as a person. Nonetheless, it’s about rising above pessimism, difficult situations and learning how to be happy in a world full of new normals.

When I was diagnosed in 2005, I felt a burning need to help others in the same kind of situation I found myself in by informing them what MS is, what it feels like and how others can help.

Living in a different country, having to learn about the often difficult Irish healthcare system, creating and sticking to medication schedules and trying to remember hospital appointments, all happened in a blur at times. Looking back now, I wonder how I ever managed. To my surprise I learned in no time, simply because there was no other way I could accomplish what I set out to do before my diagnosis: rise the corporate ladder and enjoy life while doing it.

True, I was diagnosed with relapsing/remitting MS, the second less evil brother of the four types of MS, which means that attacks or exacerbations would come and go in a wave of strong or new symptoms, before returning with new or worsened symptoms. At this stage in my life, it’s hard to see any remission on the horizon, but it could have been much worse, like being diagnosed with progressive MS or ALS as part of Motor Neurone Disease. It could have been a brain tumour, damage in the brain or spinal cord, or even a genetic disorder. Subsequently, yes… it could have been much worse. Continue reading “Life’s meant to be…”

Game, set, relapse!

“Dwell on the beauty of life.
Watch the stars, and see
yourself running with them.”
(Marcus Aurelius, Meditations)

There’s no hiding when a MS relapse is in town. It arrived on my doorstep about 5 days ago, warts and all, and I’m still trying to hide. I could give you the nitty gritty technical bit of it, but I fear it wouldn’t read like a Booker prize novel. And that, is something I aspire to one day, just not today. Continue reading “Game, set, relapse!”

Being active

Last week I received an invitation to take part in the 2013 National Meeting Day panel discussion on September 28th by the MS Society of Ireland. Needlessly, I accepted straight away as ‘Being Active and Interactive’ is something that lies close to my heart.

If you’ve been part of my blogging community for a while, you already know my online involvement in regards to writing about life with multiple sclerosis as an unwelcome passenger. Because of this, adding something worthwhile to a panel discussion about how staying active and being part of an online community can lead to a very fulfilling pastime – no matter how dull or uninviting it sounds – is something I absolutely want to be part of.

As a child and teen, being involved and fighting for the good for those less well-off was something I wanted to carry into my adult life. However, after moving from Belgium to Ireland in 2002, this activity was pushed away to work hard on my career. I studied, did lots of overtime and enjoyed every second of it. Continue reading “Being active”

MS Symptoms

Note: I am not a medical professional nor do I intend to provide any medical advice to anyone. Please see your family doctor or neurologist if you have any health care concerns. My intention is to provide accurate information from the perspective of an informed patient.

Note: As an MS patient you can experience several or very few of the symptoms listed below, they can also vary in severity, duration and recurrence. 

Note: Different people are likely to experience very different symptoms. Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another.

Note: This is not a list of all my MS symptoms but a list of possible symptoms each MS patient can have.

Note: The majority of people with MS do not become severely disabled. Most people with MS learn to cope with the disease and continue to lead satisfying, productive lives.

Note: MS is not contagious and is not directly inherited.


Autonomic nervous system problems  Blood pressure and heart problems; difficulty breathing and swallowing
Fatigue Physical and/or mental exhaustion
Gastroesophageal Reflux Acid reflux
Inappropriately cold body parts  
Sleeping Disorders   
Uhthoff’s Symptom Increase in severity of symptoms with heat
Anosmia; ageusia Impaired sense of taste and smell
  Epileptic seizures
Dysphagia Swallowing problems
Respiratory diseases Breathing problems
  Continue reading “MS Symptoms”

MS Medication

Please consult with your neurologist, MS nurse or GP if you feel your medication is not working as well as you had hoped. I am not a medical professional nor do I intend to provide any medical advice to anyone. Please see your family doctor or neurologist if you have any health care concerns. My intention is to provide accurate information from the perspective of an informed patient.

The following medication listed has only been found effect for people with Relapsing/Remitting MS, and for some people with Secondary Progressive MS.

For a complete list of available medication, go to:

Disease-modifying drugs

Continue reading “MS Medication”