Sunday, May 20, 2012

Hello, my fellow MSers
I have gone through a second melt down. Saturday was a pretty hot day for those of us who are heat sensitive. I attended a video conference at the Fairfield Hotel here in Toledo, the topic being MS of course and the new drug therapy Gilenya, in pill form to be taken for R/R MS in adults. It has a lot of side affects and not very nice ones: slow heart rate that should return to normal in about 2 months, it may also cause increased risks of serious infections.
It lowers the number of white blood cells (lymphocytes) in your blood;
fever, tiredness, body aches, chills, nausea, or vomiting. Yech!! As for myself I will stick to my betaseron and the much hated shots. Yet, the thought of only having to pop a pill each day is inticing. Have any of you opted for Gilenya? or may be thinking about trying it? Let me know your thoughts and or how you are doing with it if you have started taking it.

Well my friends try to stay cool, limit your time in the sun.It has taken me several days to get back to feeling normal...normal? whatever that means to person with MS. Whenever, I venture out on hot days I am wearing my cooling vest with ice packs in the pockets, the packs are good for approxmately 4 hours, then if you still going to be out you will need to switch the melted ones with fresh frozen ones. The most important step of all in this process is to remember to put the ice packs in the freezer the night before. I have neglected this step a time or two.

I am providing a link to my facebook page for my support group, My Brother's Keeper African American MS Support group, check it out this support is for all people of color, not just African Americans. People of color have some very serious differences in the way MS affects us, the disease course is much more severe and progression more rapid. You will find an article there that you can read on the present research, on this topic. http://www.facebook.com/MyBrothersKeeperAfricanAmericanMsSupportGroup/photos.

Until we meet again be well and take control of your MS, never allow MS to control you or determine the quality of life that you will enjoy.

Shirley

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