mobility

Multiple Sclerosis Support Organizations And Events

May 11, 2012 by Sara

World MS Day is just around the corner on May 30th 2012. What have you done to raise awareness for Multiple Sclerosis this year? I’m ashamed – I know people who have participated in Walk MS for years, but I have not. In fact, I never knew how to get involved until this year. And I’m guessing I’m not alone. We have fantastic Multiple Sclerosis support organizations within our reach – do you know who they are or what they do?

In honor of World MS Day, I present to you the following organizations that provide support to those of us with Multiple Sclerosis and each organizations opportunities to take part in the MS community, including fundraising and raising awareness to fight MS. Each of these organizations provides a wealth of information on their websites and also takes part in advocacy for the MS community.

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

May 5, 2012 by Sara

Happy 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.

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

August 28, 2011 by Sara

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!

A Reader’s Story – Kathy’s Success With Gilenya

March 15, 2011 by Sara

The message below is a reader’s story sent to me by a reader named Kathy (http://gilenya-girl.blogspot.com/ ) who is also using a blog to chronicle her adventures in treating MS with Gilenya. She’s had tremendous success with it right away. Stories like this give me so much hope!

I have had MS since 1987, although it was not diagnosed until 1992. This is often the case with MS, as we all know. I have been on Beta Seron since 1993. I tried Ampyra last year with no success. I had a major flare-up about four months ago, and steroids no longer worked. My doctor gave me the choice of Gilenya or Tysabri. I hate MRI’s and they are necessary when you are on Tysabri. I selected Gilenya!