Simplify Your Life – Part 1 – Finances

by Sara on October 6, 2012

simplify your lifeMultiple Sclerosis has certainly complicated my life in many ways. The varieties of stress that come along with modern life are compounded exponentially with this disease. I have new doctors now, excess weight, less energy, disability, handicap parking tags, canes, fans to cool me down, bottles upon bottles of medications, a CPAP machine, bills and statements from hospitals, and, last but not least, worries. A lot of worries. At times I have felt supremely overwhelmed with stuff, with concerns, with financial problems, with health problems, with responsibilities (dinner, dishes, laundry, shopping, cleaning, preparing for work). How do you simplify your life?

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Multiple Sclerosis And WeightWhy is it unusual for us to talk about Multiple Sclerosis and weight? They both affect us so much and they do affect each other. But we often avoid acknowledging them together. Multiple Sclerosis itself isn’t the only part of having MS that affects our weight – all those drugs that we take for this that and the other play a large part in and of themselves. Between fast food, soda, genetically modified fruits and vegetables, and meat that has been filled with hormones and antibiotics, it’s a wonder we live long enough to even take the medications which alter our bodies on top of everything else. Not surprising that so many of us believe that diet and exercise play a large part in our disease course.

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Introducing Aubagio

by Sara on September 16, 2012

AubagioLast week Sanofi SA’s oral drug for Multiple Sclerosis, Aubagio (also known as Teriflunomide and A77 1726), was approved by the FDA. Somehow this one snuck under my radar and here we are with it scheduled to be prescribed by October 1st!

First, the bad news: studies show that it’s no more effective than Rebif (and maybe less effective). With Gilenya already on the market and BG-12 looming, I doubt that this drug will make a huge impact. It is related to an existing arthritis drug, leflunomide.

The good news is that it does work compared with placebo and is generally safe and well-tolerated. Because it acts differently than interferons, it may also make patients less susceptible to infections. The more choices we have for treatment, the better.

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Agenda Acthar

by Sara on September 8, 2012

ActharHave you heard of Acthar Gel, a new treatment for Multiple Sclerosis relapses? Surprise – this drug has been around for decades, originally approved in 1952. Acthar was essentially abandoned in the 1980’s when bested by methylprednisolone.

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Linking Depression And Multiple Sclerosis

by Sara on September 1, 2012

Depression And Multiple SclerosisDepression and Multiple Sclerosis are inherently linked. Depression is not something that solely affects those of us with MS, and it is often underreported or undiagnosed.

While many individuals without MS experience depression and many individuals with MS may never experience it, more than 50% of individuals with MS will experience some form of depression during their lives. At any given time at least 17% of us will be depressed in one way or another. But there is hope, there is treatment, and there is possible prevention.

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BG-12: The New Normal For MS Treatment?

by Sara on August 25, 2012

BG-12BG-12 (Dimethyl Fumarate) has not yet been approved for use, but trials have been overwhelmingly positive for this low-risk oral drug. Approved for Fast Track (10 months of review) by the FDA on February 28 2012, BG-12 should be available to Relapsing-Remitting MS patients and possibly for individuals with rheumatoid arthritis as a pill taken 2 or 3 times daily before 2013. The European Union, Canada and Switzerland are also currently reviewing this drug.

In addition to rheumatoid arthritis, Dimethyl Fumarate (DMF) is also being studied for its effects on lupus and cancer. DMF is a Fumaric Acid Ester which has been used to treat psoriasis since 1959.

Neurologists around the world are already planning to make this their go-to first line treatment for patients with Multiple Sclerosis even though Biogen Idec (the company behind Avonex and Tysabri) has not yet released a price profile of the drug. Why is BG-12 expected to quickly become the world’s leading MS treatment?

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Stem Cell Treatment For Multiple SclerosisHow much do you know about stem cell treatment for Multiple Sclerosis?

The idea of a cure for Multiple Sclerosis is threefold:

  1. Prevention Of Disease Development
  2. Reversal Of Damage Done Bye The Disease
  3. Cessation Of Future Disease Progression

While some of the latest research is very promising, no cure has been found. Our conventional treatments work to slow progression of the disease. We can use diet and exercise as well as other alternative therapies to attempt to control the disease. We can stay out of the heat to avoid its effects. Some have even gone through the controversial liberation therapy.

But there are some with Multiple Sclerosis who have unusually aggressive disease progression. Or they don’t respond well to any treatment. When nothing works for you, what risks and costs are you willing to face? I think that stem cell therapy may be the future of all treatment for Multiple Sclerosis.

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Lumbar PunctureThere is no single test to diagnose Multiple Sclerosis – it is a clinical diagnosis, meaning that the diagnosis comes about as a result of multiple tests and symptom analysis. When I was diagnosed an MRI, a lumbar puncture, and paralysis in my right arm and on the right side of my face were all taken into account. Although it took years to get to this point, you could say that I was fortunate to have such a clear case – many individuals have a very difficult time receiving a diagnosis while others may be incorrectly diagnosed with MS. The lumbar puncture, or a crude version of it, was developed in 1889 to relieve intracranial pressure for tuberculous meningitis.  It has been somewhat refined over the years as many different uses for it were discovered, but the basics remain the same.

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Gilenya Test ResultsMy one year anniversary of taking Gilenya occurred in May, but my first MRI results and latest blood test since beginning treatment occurred only recently. Multiple Sclerosis can be a very unpredictable disease, but prior to treatment with Gilenya I averaged 2 – 3 relapses per year. My neurologists have told met hat the average gap between relapses is 18 months which I have never achieved. However, I am getting closer every day as this is the longest relapse-free period I have ever had since diagnosis.  My Gilenya test results during my last office visit were overwhelmingly positive.

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Multiple Sclerosis And RelationshipsIf your life is like mine, Multiple Sclerosis has the potential to occupy most of your thoughts during the day. Maybe your symptoms require near-constant attention. Or perhaps, like me, you experience constant nerve pain. I bet you’re irritable. I bet sometimes you wish those around you could feel what you feel so that they could truly understand. I bet that you’re often sad. I bet that you’re driving the world away from you. Multiple Sclerosis and relationships don’t always go well together. I’m writing today about grace, kindness, and regret.

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