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
Sunday, May 20, 2012
Monday, May 14, 2012
Hello fellow MS'ers
It is a beautiful day today, and I hope all of you are well and pressing forward.
From time to time I will be sharing with you various research information that I come across as it pertains to African Americans and other people of color. I am including in this post some excerpts from and article on this topic:
Ethnic Groups and MS Research
Source: Neurology. 2010 Jul 20; 75(3):217-23. & PMID: 20644149 (28/07/10)
MS develops when myelin, the insulating tissue around neurons in the brain, is attacked by the body's own immune system. "The findings show that ethnic differences in multiple sclerosis extend to the immune response system, which plays a central role in multiple sclerosis," Dr. John R. Rinker, from Washington University School of Medicine in St. Louis, said in a statement.
This study found that blacks with MS are more likely to experience a more aggressive course of disease, more likely to develop mobility impairments, and more likely to develop opticospinal MS and transverse myelitis.
While the disease is more likely to afflict Caucasians, it's showing up more and more in minorities. USC researchers hope discovering why minority cases are on the rise will eventually lead to a cure for everyone.
African-Americans are more likely to have more destruction and a rapid escalation of symptoms. In Asians, the disease tends to affect the optical nerve and motor function.. And Latinos appear to experience a mix of the two.
Source: KABC Los Angeles 2010 KABC-TV/DT (14/05/10)
African/Americans with MS have more severe symptoms, decline faster than whites
Fewer African Americans than Caucasians develop multiple sclerosis (MS), statistics show, but their disease progresses more rapidly, and they don’t respond as to therapies, a study by neurology researchers at University at Buffalo.
Magnetic resonance images (MRI) of a cohort of 567 consecutive MS patients showed that blacks with MS had more damage to brain tissue and had less normal white and grey matter compared to whites with the disease. Results of the study appear in the Feb. 16 issue of the journal Neurology.
"Black patients showed more brain tissue damage and accumulated brain lesions faster than whites, along with rapid clinical deterioration," confirms Weinstock-Guttman. "The results provide further support that black patients experience a more severe disease, calling for individualised therapeutic interventions for this group of MS patients."
"KNOWLEDGE IS POWER," the more knowledge that we have about MS, the more control of our lives we will have. Know your enemy.
Laughter is the shock absorber that eases life.
Gas station sign
It is a beautiful day today, and I hope all of you are well and pressing forward.
From time to time I will be sharing with you various research information that I come across as it pertains to African Americans and other people of color. I am including in this post some excerpts from and article on this topic:
Ethnic Groups and MS Research
Source: Neurology. 2010 Jul 20; 75(3):217-23. & PMID: 20644149 (28/07/10)
MS develops when myelin, the insulating tissue around neurons in the brain, is attacked by the body's own immune system. "The findings show that ethnic differences in multiple sclerosis extend to the immune response system, which plays a central role in multiple sclerosis," Dr. John R. Rinker, from Washington University School of Medicine in St. Louis, said in a statement.
US Ethnic MS Study
A study, supported in part by the National MS Society, comparing the
clinical characteristics of MS in African Americans and Caucasian Americans
found significant differences between these two groups. This study found that blacks with MS are more likely to experience a more aggressive course of disease, more likely to develop mobility impairments, and more likely to develop opticospinal MS and transverse myelitis.
While the disease is more likely to afflict Caucasians, it's showing up more and more in minorities. USC researchers hope discovering why minority cases are on the rise will eventually lead to a cure for everyone.
African-Americans are more likely to have more destruction and a rapid escalation of symptoms. In Asians, the disease tends to affect the optical nerve and motor function.. And Latinos appear to experience a mix of the two.
Source: KABC Los Angeles 2010 KABC-TV/DT (14/05/10)
African/Americans with MS have more severe symptoms, decline faster than whites
Fewer African Americans than Caucasians develop multiple sclerosis (MS), statistics show, but their disease progresses more rapidly, and they don’t respond as to therapies, a study by neurology researchers at University at Buffalo.
Magnetic resonance images (MRI) of a cohort of 567 consecutive MS patients showed that blacks with MS had more damage to brain tissue and had less normal white and grey matter compared to whites with the disease. Results of the study appear in the Feb. 16 issue of the journal Neurology.
"Black patients showed more brain tissue damage and accumulated brain lesions faster than whites, along with rapid clinical deterioration," confirms Weinstock-Guttman. "The results provide further support that black patients experience a more severe disease, calling for individualised therapeutic interventions for this group of MS patients."
"KNOWLEDGE IS POWER," the more knowledge that we have about MS, the more control of our lives we will have. Know your enemy.
Laughter is the shock absorber that eases life.
Gas station sign
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