The MonSter is Real!

April 9th, 2012 by Laina Turner

Came across this post and wanted to share.

Read original post here.

Unlike a bad dream, it doesn’t come only when I’m sleeping, it doesn’t go away when daylight comes, and even when my mind is occupied with hundreds of other thoughts and I’m busy with the “stuff” of living, working, and trying to care for my family, it lurks about and, without warning, it attacks, disrupting my cognitive and physical functioning, oftentimes bringing everything to a sudden screeching halt.

The problems are real, the pain is real, the symptoms are real…even if you can’t see them.  Unlike a common cold or minor injury, it doesn’t happen and then get all better and go away.  The nerve pain that accompanies an attack is excruciating and unlike any other type of pain.  If you’ve ever had a bad toothache, just try to imagine that type of pain occurring in any other part of your body.  It can affect any body part or function at any time for any length of time.  The numbness, tingling, and weakness that often occur can mimic signs of a stroke and can be very frightening and debilitating. Read more here.

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Key Points to Understanding the Potential Causes of Multiple Sclerosis (MS)

April 1st, 2012 by Laina Turner

Interesting article. Full original post here.

  1. Molecular pieces of bacteria (mimicry) have been identified that can cause autoimmune response against nerve insulation (myelin).
  2. Accidental discovery that Fecal Microbiota Transplant (FMT) in 3 MS patients led to a reversal of the disease.
  3. Dietary changes have been reported to reverse disease symptoms in some people.
  4. Vitamin D deficiencies are widely observed across many autoimmune diseases.
  5. Abnormal obstructions in the veins in the necks of MS patients are being studied with MRI and the blood flows are being measured with Doppler MRI techniques.  Some have claimed reversal after balloon angioplasty to open the blockages.  Many trials are on the way.  This remains a controversial bit of research.

The five items above are described further below.

Professor Westall Discovers the Connection Between Gut Bacteria and Multiple Sclerosis

Professor Frederick Westall has a doctorate degree in chemistry and worked with Dr. Jonas Salk, the inventor of the Salk vaccine for polio, for over 12 years at the Salk Institute in La Jolla, California.  Dr. Salk chose Professor Westall to be in charge of the experimental development of the multiple sclerosis vaccine that occurred in the 1970′s and 80′s because Professor Westall was the first person to discover and synthesize a chemical that could induce an experimental version of multiple sclerosis in animals.  The vaccine worked in animal trials but did not perform as expected in human trials due to subtle differences between the immune systems of the animal and human.  After leaving wrapping up his research at Salk, he accepted a position to teach chemistry at Cal Poly Pomona.  After retiring from Pomona, Professor Westall has continued to self-fund his research to find the cause and cure for multiple sclerosis.  In 2006 he published the following landmark paper in the Journal of Clinical Microbiology where he discovered that pieces from a person’s normal gut bacteria could provide the irritating chemicals, known as antigens, to drive the autoimmune condition for multiple sclerosis.  By utilizing the vast genetic database of the National Institute of Health, he identified candidate bacterial species that were capable of producing the antigens that excited the immune system to attack the nerve tissue in the brain.

Molecular mimicry revisited: gut bacteria and multiple sclerosis.

Westall FC.

Found this amazing post – enjoy

March 20th, 2012 by Laina Turner


See/read more great things like this on the blog Stuff Could Always be Worse.

MS Awareness Week Day 1: MS Kills Connections by Trevis Gleason

March 13th, 2012 by Laina Turner

Read original post here.

Today marks the beginning of MS Awareness Week in the United States — seven days of awareness adverts in print, on TV, and over the radio. If we all do our jobs well, everyone will have heard something about multiple sclerosis this week.

As part of the kick-off to MS Awareness week, I’d like to announce that we’ll be posting daily blogs this week. Every day we’ll be covering one topic or the other as it relates to living life with MS and sharing stories which will help others understand. Today, we’ll begin with a new awareness campaign announced by the National MS Society.

“MS Kills Connection — Connection Kills MS”

Some early reviews think the work “kills” right next to MS is a bad idea. I understand the concern, but we’ve been speaking the stark truth about multiple sclerosis in the pages of the Life With MS Blog for nearly 6 years (in fact we have an anniversary this week — how fitting!) and I’ve been begging for some honest language in the MS lexicon for some time. The Society’s willingness to print my “Unspeakable Bits” Blog was not an easy decision for many, but it was a no-brainer to the senior leadership and our third post will be up soon.

Multiple sclerosis does kill connection — connection between my axons and the neurons which fire signals in the brain, connection between my brain and spinal cord, connection between my brain and my body… connection between my person and my community. MS kills connection!

With the new site, a new social media type outlet has been made available today.

I was part of the beta test run for MS Connection and find that it will be an interesting and, eventually, useful tool to keep in touch — real time — with events, activities, news, and research. Through, we can hear about important legislation being acted upon (or not) in Congress and our state legislatures. We can read up on other peoples’ successes (and failures). We can join a group conversation, keep abreast of famous people living with MS, and much more.

MS Connection is intended to be a platform from which we, the users, take the connections from one place to the place we need them.

I’ve started a companion group on the site called “Life with MS” — I mean, what else would I call it, right? You can join the group after you register and set-up your profile. It’s easy and I’m already reading things from people who get my MS!

It may seem like another “thing” to do and with which we have to keep up. It may indeed prove too much for some of us to keep up with, but I’m willing to give it a try. I look forward to “meeting” some of you on this new networking site.

One last little thing to share today: A new video has posted which can help some people to understand the disease a bit better. “MS Impacts All Of Us” may be of use to those of you who wish to share during this MS Awareness Week.

Tomorrow, we’ll post about an exciting research webcast that you can join from NYU at 9:15AM Eastern Time (they apologize for the early start, but I’m sure it will be ready for downloads soon after). We’ll make sure the post is up bright and early!

Wishing you and your family the best of health.




Read original post here.

Living with multiple sclerosis by Sarah O.

January 27th, 2012 by Laina Turner

I suffer from Multiple Sclerosis. I suffer from a cocktail of other ailments that such abbreviations bring. But you never know what or which. You spend endless hours every week with new symptoms that could fit into other definitions. There is a concoction of medications. There is an assortment of supplements that promise good health. Is there ever hope. Never. Hope is about knowing that the disease will go away. Hope is for the foolish.

There is fighting. There is preparedness. And there is perseverance.

I must live as the capacitor that can store every iota of strength for my depleting years ahead.

I will persevere.

How do I begin to tell you my story? There is an ocean of words behind every one that I will write. I do remember that routine afternoon when things changed.

I was working on an art project on my computer when suddenly, I saw a strange grey blur around everything. We visited a number of ophthalmologists after this, only to be dismissed repeatedly that I was imagining my vision changes. Ultimately, the mind numbing headaches, the dimming vision and a lot of online help led me to believe I had optic neuritis. I felt pain when I moved my eyes, a pressure on my eyeball like it would explode and loss of colour; over the next few weeks my world became dimmer and dimmer. Ultimately, the edges around everyday objects began to separate, and I began to see two of everything.

After a painful wait, seemingly unintelligent doctors, we finally met a neurologist who told us about optic neuritis. Optic neuritis is inflammation of the optic nerve, which carries visual information from the eye to the brain. If the nerve gets inflamed, it damages the insulation around it (the myelin sheath) and may result in permanent vision loss.

That night, as my sister and I poured over the internet, we came across a website which warned that this is a fairly common symptom of multiple sclerosis (MS). I knew MS was something sinister, but nothing beyond that. The ground beneath my feet shifted. We shut the laptop and went to sleep. Unfortunately for me, as I bent my neck forward that night, an electric shock ran down my spine.

The Lhermitte’s sign, which confirms the neck part of the spinal cord has been affected by MS; the other shivers were my own. Knowing that something was wrong, but praying otherwise, I went in for my MRI. Lesions on my brain shined white on my MRI scans. They indicated scarring (sclerosis) in my brain where destruction of the protective myelin sheath had taken place. A further physical examination by the neurologist led to my diagnosis. I held his gaze when he told me. I accepted it easily enough. He must have put me in the box marked denial.

Learning about your disease is the easy part; living with it is a whole different monster.

The first step was to do something about the vision. I was put on intravenous corticosteroids, and gradually but surely the world came back into focus by my third dose. I learnt I had relapsing-remitting MS –  the good kind. Basically, my immune system was attacking itself and the protective layers (myelin) around my nerves were getting destroyed.

In medical terminology, this demyelination impairs the nerve functions of interpreting and receiving signals from the brain. Vague symptoms of demyelination in the brain sometimes begin long before the disorder is diagnosed. For example, tingling, numbness, pain, burning, and itching may occur in the arms, legs, trunk, or face. The sense of touch may be reduced. People may lose strength or dexterity in a leg or hand, which may become stiff.  Often the disorder slowly worsens, disabling some people, but life span is unaffected unless the disorder is very severe. Luckily for me, I would have periods of relatively good health alternate with episodes of worsening symptoms. As recovery during remission is good but incomplete, the disorder worsens slowly over time.

Since symptoms vary widely, sometimes people can go years before a diagnosis and therefore don’t receive treatment before much damage has already been done. There is no known cure for the disease. Patients are instructed to count on disease modifying agents that help prevent new attacks. As of 2011, six disease-modifying treatments have been approved by regulatory agencies of different countries, including the US Food and Drug Administration (FDA), the European Medicines Agency (EMEA) and the Japanese PMDA. The six drugs are interferon beta-1a (Avonex, Rebif), interferon beta-1b (Betaseron), glatiramer acetate (Copaxone), mitoxantrone (Novantrone), natalizumab (Tysabri) and fingolimod (Gilenya), the first oral drug available.  In Pakistan, Bayer Healthcare is providing a holistic solution by ensuring a consistent supply of Betaseron, home based nursing support for administering the injections, and physio-therapy. The drug is equally hard on the body, mimicking flu like symptoms to the extreme.

I took these injections for several months, then gave up. The drug was debilitating. In Pakistan, people who do not respond to Betaseron have to find ways to manage supply for other drugs which are not available through a dependable source. And doctors cannot help much further. Support groups are limited and mostly inactive. There is an MS support page for Pakistan on Facebook with 21 likes.

It is not that MS is uncommon in Pakistan. Infact researchers from Aga Khan University have just published data from the first in-depth study of multiple sclerosis in Pakistan, enrolling 142 patients. It is usually that people with MS don’t like to talk about it. The disease is hard to explain. There is little knowledge about it. Reactions may be hard to manage. Also, supporting other MS patients requires massive reserves of energy. People going through anger, frustration, denial, and depression make a hard disease harder to cope with. And so, many MS awareness months have passed silently by.

Living with MS is not easy. Unusual and sudden fatigue, numbness, tingling, a reduced sense of touch, pain or burning, itching, dim or double vision, weakness and clumsiness, difficulty walking or maintaining balance, tremor, uncoordinated movements, stiffness, unsteadiness, problems controlling urination and bowel movements, mood swings, inability to control emotions, mental impairment, memory loss, poor judgement and inattention are some of the varying symptoms of MS. Everyday life becomes challenging; an uphill climb. Planned events become harder to plan and predict.

I read up a lot but I was not ready for it; the heavy swing of a pendulum that will hit you each time with something frightening. I remember the first time my energy left me. Urgently and without warning, like being hit by a truck on a beautiful morning. Willing my arms to move, and my legs to listen; first lovingly, then angrily. The time when I could listen to the words of a loved one but could not put them together. Or the time when I got stuck in a moment with no idea about what had happened before and what was coming later. Living with crushing pain, yet interacting with people at home and work with a smiling countenance. Doing your how-do-you-dos, with endless pills.  Just keep going, says a voice. Going mindlessly at times. Wondering what it is like to be in another body. Sometimes the smiles run out.

How can you explain to someone, something that doesn’t have a fever, or that doesn’t bleed. How many times I have heard the words, “But beta, you look fine!”.

How do you explain to the loving and demanding relationships you have created around you?

The meter ran out today, I just can’t.

Original blog posted here.

Diabetic Mice Provide a Surprising Breakthrough for Multiple Sclerosis Research

January 6th, 2012 by Laina Turner

The team has discovered that when mice with Type 1 Diabetes are injected with myelin protein — the insulating material that coats neurons — they experience the periods of relapsing and remitting disability associated with brain lesions in humans. And for the first time, they’ve been able to monitor this brain lesion process using magnetic resonance imaging.

Dr. Frenkel believes his finding will lead to the development of more effective treatments for MS.

Read full article and more

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A really interesting post about social media and the medical community

December 19th, 2011 by Laina Turner

Social media starts the patient dialogue with doctors and nurses

by |

A patient apologized to me for asking so many questions. There is no need to apologize, I said to the patient; it’s wonderful that you have so many questions concerning your health care. I mentioned to her that she is an “empowered and engaged patient,” and that is a good thing.

It’s no secret that health consumers are turning to the internet for health information.

In a recent article from MediaPost News, Gavin O’Malley writes that, according to new a study by Epsilon Strategic & Analytic Consulting Group, that, “40% of online consumers use social media for health information — reading or posting content — while the frequency of engagement varies widely. According to the study, individuals who use healthcare social media fall into two broad groups: the 80% who are highly engaged patients, and take active roles in health management; and the 20% who lack confidence to play an active role in their own health.”

Highly engaged patients are proactive in their health care

The reasons health consumers engage in health care social media are simple. Read More….

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How I Found Out I Have MS!

December 16th, 2011 by Laina Turner

Tricia’s Story of Multiple Sclerosis

December 15th, 2011 by Laina Turner

Purchase The MS Project ebook on Amazon for 2.99

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What it’s like to have MS – one person’s perspective

December 13th, 2011 by Laina Turner

Purchase The MS Project ebook on Amazon for 2.99

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