The drugs with all the shiny happy people in the ads are absolute shit once you get to a certain point. They advertise some small percentage of efficacy, but that's always on newcomers to MS, never on people who've had it long term. And anyone with this disease knows that the first few years are usually pretty mild. My heart goes out to anyone who gets slammed with refractory RRMS. That's a type where the attacks are very severe almost from the word go. I'm fortunate not to have that variant. The trials were all done with newcomers and next time you happen to see an ad for one of the drugs, look for the fine print describing the person in the ad touting the benefits. They'll usually say something like "Kim, 34 dealing with MS since 2007!". Well whoopdee shit; two years out I guarantee I could have outrun, outbiked and outworked 90% of the people I know. That's not me saying I'm all that, it's me saying that the beginning of this disease can be pretty mild for a lot of us. It's all about luring in new patients who are wide eyed, ignorant of the facts of the disease, scared shitless and looking for the answers they usually get at the doctor's office.
I don't trust MRI enhancement as an accurate guage of when the MS process has been stopped and we haven't defined anything truly singularly specific to MS, so we really don't have any sure way.....other than dying of old age without further progression, to prove that MS progression has been stopped.
Loobie wrote:So that's my "barnyard" justification of why I did it. No science, well barely any, just me saying "I can't go any further without trying something". This is the spaghetti that stuck the the fridge. It's as simple as that. Could I be SO wrong? Hell yes. I was wrong about Tovaxin and I was just as committed to that working. Yes I know they might be "bringing it back", but I don't have the time; simple as that. If I get slammed down, it will not be without exhausting my resources and using what others are benefitting from. If this were 15 years ago, you'd probably read the same words about why I'm letting bees sting me. So for many of us WE JUST DON'T CARE IF YOU CAN POKE HOLES IN IT. I mean for real. I don't take it personally because I really don't care if I'm wrong. I don't even have to feel right. Yes this was a leap of faith because I'd be lying if I said I understand it cover to cover. However, it's not the Esperanza Institute in the Bahamas. It's a research hospital. And like I said in my blog, if this 'ain't it; ....next.
notasperfectasyou wrote:I don't have to agree with your religion, but I am happy that you have one that you care about deeply.
notasperfectasyou wrote:I'm with you. Your post has a tone (at least to me) that suggests you really see yourself coming up on a period of potential worsening. Then again, I know you don't hold your punches. In any case, I'm in favor of trying things. I hope I've been clear about it.
The one thing that has been proven in my case is that I continue to progress disability wise on them.
Why do people get so riled up when someone expresses their "belief"?
robbie wrote:Why do people get so riled up when someone expresses their "belief"?
...speaking on behalf of the 2.5 million people around the world with ms.... It's not so much that a new idea is crazy it's just that for some(a lot)that would be just another nail in the coffin and thats to much to accept.
cheerleader wrote: Someone was mad about people pursuing CCSVI and went on a rant. It's only a few people, and they lost their heads completely. I was kinda surprised by the vitriol.
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