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.

One Response to “Living with multiple sclerosis by Sarah O.”

  1. Becky Miller says:

    Woodrow C. Monte, PhD, a food scientist, researcher, and Professor Emeritus of Food Science and Nutrition at Arizona State University, has just published a comprehensive book, “While Science Sleeps, a Sweetener Kills,” which is now available on Amazon.com. The book specifically solves the mystery of the cause of Multiple Sclerosis.

    The book presents Dr. Monte’s lifetime of research into the nutritional causes of the major diseases of civilization. His own research, along with the research of hundreds of other scientists, is presented in language the average reader can understand and apply to very easily avoid many of the worst diseases that currently kill the majority of people in the civilized world. Dr. Monte has carefully and thoughtfully pieced together the scientific evidence found in hundreds of scientific studies to show convincingly that the single culprit is methanol – a molecule found primarily in canned fruits and vegetables, tomatoes, cigarette smoke, smoked foods, and the artificial sweetener aspartame. Methanol is converted by the enzyme known as Alcohol Dehydrogenase Class 1 (ADH1) into formaldehyde inside the body’s most sensitive tissues.

    It is methanol that makes the aspartame taste sweet, and within ten minutes of consuming it, the methanol is released from its chemical bond. Each liter of diet soda contains the amount of methanol found in a pack of cigarettes, and evidence is mounting that diseases traditionally associated with smoking – most recently, heart disease and stroke – are now being associated specifically with aspartame consumption.

    The human body converts dietary methanol into formaldehyde in the stomach, liver, veins and arteries, lungs, pancreas, skin, breast, and brain. Dr. Monte makes a compelling case that it is this process, and the disease that results, that is responsible for the epidemics of a variety of cancers, heart disease, diabetes, autoimmune diseases like Lupus and Multiple Sclerosis, autism, and Alzheimer’s disease that have exploded over the past thirty years since the introduction of aspartame in the summer of 1981.

    The book also contains information and documentation showing that the product’s manufacturers and their friends in the Food & Drug Administration knew the dangers posed by aspartame, yet buried the evidence and released it for public consumption despite the risk. Furthermore, they knowingly marketed it to those research had demonstrated were particularly vulnerable to its harmful effects – diabetics and pregnant mothers. Since that time, adult onset diabetes has more than doubled worldwide, with diabetics dying from the major diseases of civilization at a much higher rate than the average population.

    Deaths from Alzheimer’s disease, in which formaldehyde inside the brain destroys memory function, have increased 10,000% since 1981. Neural tube birth defects are up around 70% in the same period of time despite efforts to compensate with recommended folic acid.

    Dr. Monte has decades of experience in food science and nutrition as a researcher, teacher, inventor, industry consultant and consumer advocate who is committed to food additive safety and the prevention of food borne diseases. He is a dedicated scientist with both a Ph.D. and M.S. in Food Science and Nutrition and a B.S. in Biology. He has been a Registered Dietician, Certified Nutrition Specialist AIN, professional member of the American Chemical Society and emeritus member of the American Association for the Advancement of Science. In 1985, he was chosen by the Council for International Exchange of Scholars as a Senior Fulbright Scholar. His testimony before Congress was instrumental in the prevention of Sulfites from receiving status of US FDA GRAS (Generally Regarded As Safe) and the implementation of mandatory labeling for most foods that contain this dangerous additive. More information about Dr. Monte and his work can be found on his website: http://www.WhileScienceSleeps.com.

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