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PML And The JC Virus

December 8, 2012 by Sara

PMLTysabri is a dream come true for many individuals with Multiple Sclerosis. Personally, I have opted to take Gilenya (for now), but Tysabri was very tempting when I considered my options after it became apparent that Rebif would not work out for me any longer. However, along with Tysabri’s side effects comes one very sinister danger: PML. One patient on Gilenya has been diagnosed with PML, and it can happen to anyone whether or not they have MS. Knowing that medication (especially newer medications) may bring a risk of PML has frightened us all.

[Read more…] about PML And The JC Virus

Filed Under: diagnostic, doctor, lumbar puncture, mri, multiple sclerosis, neurologist, pml, tysabri Tagged With: disease, exacerbation, gilenya, infection, ms, ms attack, multiple sclerosis, neurological disorder, neurologist, pml, side effects, spinal tap, steroids, tysabri

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.

[Read more…] about Living With Multiple Sclerosis – Four Years

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

Multiple Sclerosis With Brain Fog

November 10, 2012 by Sara

Cog Fog probably started sneaking up on you years before your MS diagnosis. Multiple Sclerosis alone is challenging, but Multiple Sclerosis with Brain Fog involves a totally different set of problems.

“Brain Fog” is a term generally used to describe the confusion, disorientation, general grogginess, and other issues resulting from cognitive dysfunction which commonly occurs with MS.

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Filed Under: cognitive dysfunction, multiple sclerosis, symptoms Tagged With: cognitive dysfunction, disease, exacerbation, exercise, gilenya, ms, ms attack, multiple sclerosis, neurological disorder, neurologist, side effects

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.

[Read more…] about Diary Of A Gilenya Pioneer: Latest Gilenya Test Results

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

Diary Of A Gilenya Pioneer: Gilenya Results After One Year On Gilenya

May 5, 2012 by Sara

Gilenya ResultsHappy anniversary to me! One year ago today I took my first dose of Gilenya. My heart rate waxed and waned that day, but in the 12 months since my life has steadily improved. I don’t expect roses today, but I am ecstatic that the drug is working for me. Until this time last year, I was in a pattern of a relapse every few months. I have now been relapse-free for one year and counting! So far, Gilenya results have been fantastic.

I began the journey secretly hopeful that I might be one of those few people who miraculously have so many of their lesions shrink and heal on Gilenya, but I was also reasonable. Most of my damage is well over a year old, and most neurologists will tell you to stop expecting any improvement after one year. May 5 2011, deep down I believed that I was stuck with what I had in spite of any contradictory fantasies.

[Read more…] about Diary Of A Gilenya Pioneer: Gilenya Results After One Year On Gilenya

Filed Under: gilenya, multiple sclerosis Tagged With: disease, exacerbation, fingolimod, fty720, gilenya, heart rate, liver, lymphocytes, mobility, ms, ms attack, ms hug, multiple sclerosis, muscle spasms, novartis, pill, pml, s1p-receptor modulator, side effects, spasticity

Switching Neurologists – Dumping Doctors And How To Find A New Neurologist

April 21, 2012 by Sara

Find A New NeurologistIt’s that time again- time to find a new neurologist.

I’m not a picky person. Really, I’m not. Normally I will tolerate any kind of abuse from a doctor as long as they give me accurate information about my health and write the necessary prescriptions. However, I’m now on my third neurologist. What happened?

[Read more…] about Switching Neurologists – Dumping Doctors And How To Find A New Neurologist

Filed Under: doctor, gilenya, multiple sclerosis, neurologist, rebif, treatment Tagged With: disease, exacerbation, fingolimod, fty720, gilenya, ms, ms attack, multiple sclerosis, neurological disorder, neurologist, solumedrol, steroids

Diary Of A Gilenya Pioneer: Gilenya Followup – YES! I Can Continue Taking Gilenya!

September 6, 2011 by Sara

Gilenya Followup
On The Pill!

YES! At my Gilenya followup today I learned that blood tests confirm I can continue Gilenya!

Although my current neurologist isn’t a fan of letting his patients view any of their test results I stole my paperwork for a quick read during the 3 hour wait to see him.

What I read initially sent me into a panic.

  • Page 1: My immune system has been decimated. I am one germ away from sudden death.
  • Pages Everything Else: Greek.

[Read more…] about Diary Of A Gilenya Pioneer: Gilenya Followup – YES! I Can Continue Taking Gilenya!

Filed Under: gilenya, liver damage, lymphocyte, macular edema, multiple sclerosis, treatment Tagged With: copaxone, disease, fingolimod, followup, fty720, gilenya, liver, lymphocytes, macular edema, ms, multiple sclerosis, neurological disorder, neurologist, novartis, pill, s1p-receptor modulator, side effects

Diary Of A Gilenya Pioneer: Fingers Crossed As I Experience Gilenya Side Effects

August 28, 2011 by Sara

Gilenya Side Effects

Several months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been affected. The good news is that I seem to be mostly fine so far. In spite of this year’s gloomy start with 2 separate attacks within it’s first few months, I have had no attacks since beginning this treatment. In hindsight I really do feel that Rebif, and probably interferons in general, are just not right for my body. Now that I have begun the drug I have started to focus on Gilenya side effects.

With my Gilenya followup appointment looming in a couple of weeks, I’ll soon find out if Gilenya suits me in the long run. As you can see, I do have my fingers crossed!

[Read more…] about Diary Of A Gilenya Pioneer: Fingers Crossed As I Experience Gilenya Side Effects

Filed Under: fingolimod, gilenya, liver damage, lymphocyte, macular edema, multiple sclerosis, rebif, symptoms, treatment Tagged With: disease, exacerbation, fingolimod, flexibility, fty720, gilenya, high blood pressure, hypertension, infection, insomnia, liver, lymphocytes, macular edema, mobility, ms, ms attack, multiple sclerosis, muscle pain, nerve pain, neurological disorder, neurologist, novartis, pill, s1p-receptor modulator, shortness of breath, side effects, slow heartrate, spasticity, support group, yoga

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