tag:blogger.com,1999:blog-38895750.post6089001587977027390..comments2023-10-10T20:15:32.779-07:00Comments on BRAINCHEESE: We're All Going To Die Of Something...BRAINCHEESEhttp://www.blogger.com/profile/04478852688645497036noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-38895750.post-18833700178310259262011-10-13T09:23:52.253-07:002011-10-13T09:23:52.253-07:00I came across your blog recently. I really enjoyed...I came across your blog recently. I really enjoyed the writing style of your article which I believe reflects your take on life and your illness also. Though you mentioned death many times I never felt even for a second a pessimistic tone, rather the opposite. You analyzed <a href="http://www.progressivemultifocalleukoencephalopathy.org/" rel="nofollow">pml</a> complication chances rationally and came to a conclusion based on facts, not based on mood or fear. This shows what a strong character you have.Johnhttps://www.blogger.com/profile/03162761670014987210noreply@blogger.comtag:blogger.com,1999:blog-38895750.post-19959947234807356762008-08-07T03:35:00.000-07:002008-08-07T03:35:00.000-07:00I remember when the news broke a month or two ago ...I remember when the news broke a month or two ago about the Fingolimod death and coma patients -- both from one version or another of the Herpes virus.<BR/><BR/>I was so totally freaked out that I worked myself right into a HSV outbreak, as if my body was wanting to prove something about how "I can have it and not end up dead or in a coma, just watch." My brain was not as eager to go along with the test, but my body was in control. It was the scariest week of my life so far.<BR/><BR/>Like you said, all drugs have risks. Hell, even alternative medicine can kill you if you use it just right.<BR/><BR/>I didn't know that the patients survived this PML ordeal due to plasma exchange. That is FANTASTIC news in my opinion!<BR/><BR/>I must confess that I am trying to steer clear of anything I find written about Severe Adverse Events when it comes to any of the MS medications. Right now I want to pretend I'm popping breath mints and my MS just went away. <BR/><BR/>That's my psychic story and my brain is sticking to it. Works out perfectly for me.<BR/><BR/>I'm glad you have a level head about this stuff. It's scary enough just HAVING MS...but now we get the bonus prize of Serious Adverse Events (otherwise known as death but that doesn't sound as nice). It just sucks to be us, doesn't it?Jeri Burtchell (TickledPink)https://www.blogger.com/profile/05961503858715547705noreply@blogger.comtag:blogger.com,1999:blog-38895750.post-8758103177973640842008-08-04T06:52:00.000-07:002008-08-04T06:52:00.000-07:00Hi Linda, I NEEDED to read your article today to h...Hi Linda, I NEEDED to read your article today to help me refocus my own fear. You are SO right here -- thank you for that all important message that my ears and my brain both needed today. Sending Sunshine your way, <BR/>KimAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-38895750.post-8805419903023940692008-08-04T00:46:00.000-07:002008-08-04T00:46:00.000-07:00What if your maker doesn't ask "How much ...What if your maker doesn't ask "How much did you learn and how much did you love in your lifetime?"... What if he asks something more in the line of "what did you do to help others?" I probably won't 'cut the cheese' myself on that one!<BR/><BR/>I agree with you, ya little cheese melt, that quality of life is more important than quantity. Each must make his or her own decision about which MS meds to take. Personally I choose never to try another Interferon nor go on steriods. I'm on Copaxone now, was thinking about Tysabri but at a seminar about Tysabri where my own MS neuro was the main speaker she told me, "NO, I don't want you trying it." Why I asked, after I just listened to you speak for an hour about its benefits? She said Because it is still a dangerous drug and as long as I was doing well on Copaxone she didn't want me changing.<BR/>I had to go off Copaxone for a while because of insurance/money issues. At first I panicked, then realized it wasn't the end of the world.<BR/>At this point the meds most important to me are those that help relieve my SYMPtoms of MS == spasticity, pain, fatigue and cognitive problems -- because that is what affects my life here and now.<BR/>MS has changed the course of my life drastically -- and I hate what it's done to my body and mind. I want my energy back and need to do more in the area of better nutrition and exercise, which i knows helps.<BR/>I love and enjoy so much about life, however, if I get to the point where I'm wheelchair bound and can't take care of my personal needs ... if life becomes too overwhelming -- and it could be because lack of money has now become a huge source of depression and anxiety -- than I have my plan to check out of life. Again, it's all about personal decisions for all, and for me quality of life.<BR/>But I am single with no kids. AS the survivor of a father who killed himself when I was 17, I have VERY strong feelings that those who have children or a loving spouse do NOT have the right to inflict the pain on those loved ones by killing his or herself. In my opinion those with loved ones have an extra responsibly to try harder to learn to live with whatever ails them. AND we all do better not to have a complaining spirit. I guess I need to try much harder on that one since I say "MS Sucks the life outta you, makes ya miserable & then ya die a slow, painful, agonizing, humliating death."<BR/><BR/>humm... ya think I need to work on changing my attitude???? I'll get back to you on that one.Spaz Attackhttps://www.blogger.com/profile/16028118630456939910noreply@blogger.comtag:blogger.com,1999:blog-38895750.post-64080750108535973802008-08-03T23:17:00.000-07:002008-08-03T23:17:00.000-07:00Nice view on it. It's easy to freak out when you ...Nice view on it. It's easy to freak out when you first hear about it but nice to see some preceptive on it.<BR/><BR/>The day before this news came out, I went to a seminar from a local MS doc. All the new drugs in development/research/trials are all risky. I don't think I heard of one that didn't have a death or a serious injury. We will soon need to decide if it's worth the risk a lot more often.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-38895750.post-76100419192936682712008-08-03T17:20:00.000-07:002008-08-03T17:20:00.000-07:00Bite You Indeed! I know you have a caculator on yo...Bite You Indeed! I know you have a caculator on your puter. LOL Anway, what's a number anyway? Quality of Life is what I factor in when making my decisions. Also FEAR. I will not allow the government, AMA, the ms boards or big pharma to use fear tactics to influence my decisions. <BR/>I feel that a "war" on MS, using whatever arsenal is available or offered would be like a war on myself, causing more and more focus on what is unwanted and in need of annihilation. But that's me, writing from this personal moment in time, and I reserve the right to change my tune without notice.<BR/>So, in closing, given that we make our own informed decisions based on our own personal story, I leave you with a quote from, "Little Big Man"; It is a good day to die.Bubbiehttps://www.blogger.com/profile/00243081013090420013noreply@blogger.comtag:blogger.com,1999:blog-38895750.post-19775382876169250662008-08-03T12:46:00.000-07:002008-08-03T12:46:00.000-07:00Hey Linda,I heard this news late on Thursday and p...Hey Linda,<BR/>I heard this news late on Thursday and posted the SEC form and the most thorough news article. <BR/><BR/>Then I got my butt up early on Friday and listened to the 'investor' phone conference. It was interesting to hear the doctors on the panel speak about being within the know risk of Ty, the FDA labeling, and the safety procedures in place. <BR/><BR/>It was also interesting to hear so many of the questions posed not being answered, ie. regarding whether the two cases were from the same country or not. Apparently they decided to release that information and more when they talked to NMSS.<BR/><BR/>Whoever handled preparing the statements for NMSS and the follow-up news articles including input from patients was very smart indeed. IMHO.<BR/><BR/>So far, I've not encountered negative opinions from other MSers. But then again I didn't jump on the MS discussion boards since the announcement and I don't use Tysabri.<BR/><BR/><A HREF="http://brassandivory.blogspot.com/2008/07/two-new-cases-of-pml-in-ms-patients.html" REL="nofollow">If interested, here's my post which I had updated with the NMSS statement.</A>Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.com