must speak up

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Loobie » Sat Aug 15, 2009 5:32 am

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 :lol: . 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 :lol: . I do what I think is right anyway. So for me it was this simple; taken right from my blog:

Number 1

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.

Number 2
My jugulars are clogged, they shouldn't be even if I was healthy; next

Number 3

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.

Number 4

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.

Number 5

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.
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Postby Lyon » Sat Aug 15, 2009 5:46 am

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Postby robbie » Sat Aug 15, 2009 6:26 am

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.

you said it perfect Lew , the natural way ms is can make a joke out of all our thoughts and beliefs and the drug companies are loving it .no one can be wrong in what they do, how can there be a right answer when you don't even know the question.
Had ms for over 19 years now.
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Postby Lyon » Sat Aug 15, 2009 7:15 am

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Postby Sharon » Sat Aug 15, 2009 7:23 am

Bob you wrote
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.

At diagnosis, my MRI showed no inflammation. At the time a neurologist told me that because of my age at the time (59), the MS had "died" out and the disease would not progress. My MRI has not changed (at least what can be seen on the MRI) since my diagnosis. It is now nine years later - I started using a WalkAide almost three years ago. The disability has progressed ....is this not part of the disease progression? How can one separate the non-activity on an MRI and say no progression, when a person' disability has progressed? Ask this question to a neurologist---they will probably not have an answer.

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Postby notasperfectasyou » Sat Aug 15, 2009 7:29 am

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.


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.


It's not a complicated process.

1) Discover the neuro doesn't know everything.
2) Self educate, discover that everything you've been told is heavily under salted and based on a complicated web of assumptions.
3) Learn about alternative treatments
4) Discern your way through everything your neurologist won't talk about

then....

a) you try something that's become logical to you based greatly on faith, need, accessibility and the realization that you're not getting any better. repeat if necessary.

- or -

b) find a support group who will respect your decision to stick with the neurologist and be there to listen to you when you are unhappy about the results.


And I don't fault folks who are waiting. There is something to be said for thinking about it and watching what others are doing. I am opposed to sticking ones head in the sand and pretending that all the 'off-label" efforts are foolish. Folks got to at least care enough to be interested.

I don't have to agree with your religion, but I am happy that you have one that you care about deeply.


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Postby cheerleader » Sat Aug 15, 2009 9:06 am

notasperfectasyou wrote:I don't have to agree with your religion, but I am happy that you have one that you care about deeply.
Ken


Beautifully said, Ken.

OK. So here's my question. Why do people get so riled up when someone expresses their "belief"? Why does presenting a theory, papers, evidence, and personal anecdotal evidence provoke anger, derision, sarcasm, etc.?

Marie taught me about "cognitive dissonance" - and its been helpful in understanding why folks become so uncomfortable when new thinking comes along. This may seem chauvanistic at first, but hear me out- I'm speaking historically and metaphorically. Most men no longer go to battle to protect tribal lands, there is no outlet for this protectionism. Some have sporting events, some become politicians, some become actual soldiers. Women in society have historically functioned as mothers, homemakers, and healers...taking care of those they love.

When I speak of "spreading the word"...and work to get doctors and patients information on CCSVI, it comes from a place of wanting to help, not protecting a dogma. My name here is cheerleader, I am an encourager, not the player on the field. I'm here for other people, I do not have MS. If antibiotics had worked for Jeff, I'd be doing exactly what Ken is doing. Same with copaxone, tysabri, or stem cells. But we literally fell upon something that has helped him, and is showing up in MS patients around the world.

So, back to what Ken said. I am happy for your belief in a,b,or c. My passion may create cognitive dissonance for you, but that does not give you the right to question my motives, deride me or insult me. Period.
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Postby Loobie » Sat Aug 15, 2009 9:27 am

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.
Ken


This is exactly it Ken. You guys may remember me talking about my 4 1/2 hour MRI deal I did before going out to Stanford. Well guess what? There were no new lesions; just "splashes" of disoloration. As a matter of fact, my new neurologist asked "why are you even on Tysabri?, I see nothing new". So folks trained to find lesions in MRI's can't even find my new lesions and struggle to find my old ones. So why in the hell am I getting worse? Nobody has a good answer for me on that except maybe that I'm SP. So Ken you're right, when each day feels a little wore than the one preceding it, you do think in urgent terms. I just simply couldn't wait for the Tovaxin puzzle to be figured out, for the immune suppressing things to hit a home run; none of it. This seemed to be the most logical thing so I went for it based on a layman's understanding, a research paper out of Italy, and other's people's anecdotal evidence. I mean if you aren't constantly progressing, you do feel like you have time. I didn't, and there's not any other justification I used. I mean when they told me that I had no new enhancing lesions and they struggled to even find any in my brain (I've been told by another neuro. that I had 7 new ones about 3-4 years ago) then you stop thinking in terms of I'll wait it out. What am I waiting for anyway? Nothing that works has EVER come out, so I have just simply chosen not to waste my time with any of the CRABs or Tysabri. The one thing that has been proven in my case is that I continue to progress disability wise on them. So what does anyone do when they buy something that doesn't work?
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Postby Sharon » Sat Aug 15, 2009 10:09 am

Lew you wrote
The one thing that has been proven in my case is that I continue to progress disability wise on them.


Similar to what I was saying in my above post. My annual neuro check-up would start out --"great news, Sharon - your MRI is unchanged"-your MS is not active".....Well, I'm hear to say that something was active..my disability continued to slowly progress.

Lew, we are just a short time out from our CCSVI procedure. We (including Dake) do not know for sure what or how the procedure is going to change the MS or in fact other manifestations in our bodies. Based on Zamboni's research though, maybe we have at least cleaned up some of that "stale" blood hanging around in our brain...that has got to be a good thing.

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Postby robbie » Sat Aug 15, 2009 10:12 am

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 not just our tiny .tiny group i think that any frustration about new ideas comes from the fact that if a new idea was right then in the mean time while all the reasearchers were looking one way and not the other so many lives have been affected or ruined by ms which i consider to be on of the most brutal diseases out there . in the later stages anyway.So not willing to accept the new comes from the gut feeling of there is no way we are like we are because it took over 100 years just to figure out which way to look. It takes away any hope that a cure is close and it's like they have to start all over again, honestly that just makes me want to cry. 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.
Had ms for over 19 years now.
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Postby cheerleader » Sat Aug 15, 2009 10:22 am

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.


thanks, Robbie. You expressed it really well.
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Postby notasperfectasyou » Sat Aug 15, 2009 12:38 pm

I have not been following CCSVI closely for a month or so. No slight on Marie or Cheer, but I've been busily trashing dozens of reams of medical journal articles that deal with cytokines, t-cells, macrophages and other fun autoimmune topics. I believe they are useless. But, my point is that I honestly don't know about the posts that evoked this discussion, but I could just as easily imagine that some of my posts could bring a similar result. But here's my point for today....

When I was in college there was a group of religious students that would take turns marching around the center of campus with a bible and telling everyone else that they were going to hell. I didn't have a religion back then, but I can tell you that as an outsider this seemed ineffective. Maybe it wasn't but that's my impression and as a more experienced adult, I more firmly believe that this approach is ineffective.

So IMHO there is a difference between being zealous and proselytizing. It might seem like a fine line and it can be blurred and there might be overlap. But I think, IMHO there is an important difference. I can't speak to the event that sparked this topic because I don't know and don't want to know what happened.

I hope you don't mind my borrowing the religious analogy, but it was the best one I could think of that most everyone would understand. I think I am done with this topic. Ken

ps. I anyone is good at YouTube, I'd love to know how to put hyperlinks on the youtube site, even if it's just in the comments box. Thanks.
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Postby jimmylegs » Sat Aug 15, 2009 12:51 pm

amen
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Postby cheerleader » Sat Aug 15, 2009 1:02 pm

Ken...
just read this thread thru from the beginning. 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.
I'll keep my religious tracts on the CCSVI thread :) but can I sell you a flower?
(BTW-Marie's told me that similar bombs were lobbed at ABX folks, too.)
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Postby fernando » Sat Aug 15, 2009 1:43 pm

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.


Sorry Cheer that you have to go through this. Let me tell you that I find your postings so informative, truthful and balanced that a 44 years old grown up from Argentina, like me, is perfectly able to understand and decide upon.

Thank you.
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