OK, I've read this whole thing and a lot of the argument's I would look foolish trying to dispute. However, there is one thing I do know about the autoimmune theory; there is no proven antigenic target. That's the extent of what I think I know and why I cling to the fact/premise that it's a theory. Albeit a highly researched and long established and gone forward with research upon research theory. OK, I don't know how to construct that sentence better so just try and get the gist
. However, I just wrote a lengthy 'screed' on my blog that is aimed at one thing: why I did this. There are no anecdotes of profound wisdom on there about why I KNOW that this is it. What it talks about is the point that a lot of us are at. I'm at a crossroads right now. Taking the medicines has left me wanting, and progressing to the point where the next step is full time cane use, then a walker, then a wheelchair.
So I have no choice but to do SOMETHING, ANYTHING. I'm not talking leeches or bloodletting, but the choices we have have simply not worked for me and I can't let myself progress anymore without trying SOMETHING. I take no offense, except when the mood gets nasty, to anyone thinking I'm nuts. Many have come before you all who have thought the same thing about me
. I do what I think is right anyway. So for me it was this simple; taken right from my blog:
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.
My jugulars are clogged, they shouldn't be even if I was healthy; next
You could put stents in my veins that are perfect and it's not like it would harm me. This isn't an experimental drug where you don't know the side effects. The side effect with this is post surgery pain; something you get over.
The etiopathegenesis of this disease is very poorly understood. Even though it's not what your neurologist will tell you, autoimmune is a theory. The antigenic target is not known (thanks Marie) which makes it a theory. Hey, I'm not saying it's not correct, but it's not proven. Showing statistical relevance (enough to get approved drugs) with a bunch of new patients is not a big deal to me.
Right now (before the surgery) I was getting worse non stop. I want it to stop and I've been on Avonex, Tysabri and Tovaxin. None of them kept me from having relapses. So why should I keep taking them? They 'ain't free that's for sure and we don't know their long term effects and you're supposed to be on them for life.
So there's my "everybody gives a shit about what I have to say" screed about why I'm doing this untested procedure. The internet forum I frequent; http://thisisms.com
has a posting from one of Dr. Zamboni's original study patients. Apparently they are now allowed to talk about it. Some of these folks are 18 months out from the procedure (slightly different, they used balloons, but will be getting stents soon I think) and doing very well. I won't comment on someone else's condition without asking them so do yourself a favor if you're curious and check it out. You register, go to forums, scroll down to CCSVI and the one I'm talking about is under the heading "Press Release Bologna (that's a city dumbass, not a lunch meat!) September 8th". The part in the parentheses is not there! So later until next week!
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.