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Coping with multiple sclerosis symptoms, attacks, and treatments

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ms hug

Living With Multiple Sclerosis – Four Years

December 1, 2012 by Sara

Living With Multiple Sclerosis“They” say that you are considered newly diagnosed for the first 2 1/2 to 3 years after your Multiple Sclerosis diagnosis. It seems like only yesterday that I posted my “Year One” article. It seems like only yesterday that  I was diagnosed! Somehow, enough time has passed that I find myself at a point where I have been living with Multiple Sclerosis for four years.

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Filed Under: bg-12, cannabis, ccsvi, cognitive dysfunction, depression, diet, doctor, exercise, fingolimod, gilenya, heat intolerance, insurance, lumbar puncture, mri, ms hug, multiple sclerosis, neurologist, rebif, research, stem cell therapy, symptoms, treatment Tagged With: disease, exacerbation, fingolimod, fty720, gilenya, ms, ms attack, ms hug, multiple sclerosis, muscle spasms, neurological disorder, neurologist, spasticity, vitamin d

Diary Of A Gilenya Pioneer: Latest Gilenya Test Results

July 28, 2012 by Sara

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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Filed Under: gilenya, mri, ms hug, multiple sclerosis, neurologist, symptoms Tagged With: disease, exacerbation, fingolimod, fty720, gilenya, liver, ms, ms attack, ms hug, multiple sclerosis, muscle spasms, neurological disorder, neurologist, novartis, pill, pml

What is the MS Hug / Girdle Pain / Girdle Pain Sensation / Squeeze ‘O’ Death?

April 29, 2011 by Sara

What is the MS Hug?
Grey’s Diagram Of The Body’s Intercostal Muscles

Lately I have had serious trouble with something frequently called the MS Hug (also known as Girdle Pain or sometimes Girdle Band Sensation). What is the MS Hug? There are a couple of theories  on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (OK it’s not this bad every single time). The more popular theory is that the spasms are caused  by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor for me. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work with computers and have no medical background.

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Filed Under: insurance, ms hug, multiple sclerosis, symptoms, treatment Tagged With: alternative therapy, emergency room, exacerbation, fingolimod, gilenya, girdle pain, insurance, intercostal muscles, ms, ms hug, multiple sclerosis, muscle spasms, neuropathic pain, parasthesia, psuedoexacerbation, spasticity, spinal cord lesion

Diary Of A Gilenya Pioneer: Insurance And Gilenya

April 19, 2011 by Sara

Insurance And Gilenya
Money Money Money!

Typical Insurance Business Model = Avoid Providing Service? I’ve glimpsed the battle between insurance and Gilenya.

Several weeks ago I got the call from Novartis that I had been rejected by my insurance for Gilenya. When I ask why, she reads to me “Cost exceeds limit per patient. No further review.” My insurance coverage has no limit on the cost of a prescribed medication – it is technically covered and my insurance company has just chosen not to.

Within seconds, I began an exacerbation. For the last few weeks I have been experiencing something that is commonly called “The MS Hug.” I can’t print the things I call it in my head. At it’s worst, it’s the kind of pain you don’t want to live through.

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Filed Under: fingolimod, gilenya, insurance, ms hug, multiple sclerosis, symptoms, treatment Tagged With: exacerbation, fingolimod, fty720, gilenya, insurance, ms, multiple sclerosis, neurological disorder, neurologist, novartis, pill, s1p-receptor modulator

My First Year Of Multiple Sclerosis Diagnosis

January 16, 2010 by Sara

First Year Of Multiple Sclerosis
Sara’s First MRI

My first year of Multiple Sclerosis went by so quickly.

Year one of my Multiple Sclerosis diagnosis wrapped up about a month ago (I was diagnosed December 10 2008) and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially.

No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.

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Filed Under: insurance, ms hug, multiple sclerosis, rebif, research, spasticity, symptoms, treatment Tagged With: baclofen, botox, disease, interferon, ms, ms attack, ms hug, multiple sclerosis, muscle spasms, myelin, neurologist, pain, rebif, solumedrol, spasticity, spinal tap, steroids, valium, vertigo, vitamin d

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