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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Cece » Fri May 07, 2010 1:24 pm

JCB wrote:He didn't support bee sting therapy or having all your fillings removed either.

I keep hearing these as comparisons and I don't really know: were there any scientific studies that gave a basis to these ideas? Or were they completely patient-driven/media-driven phenomenons? One of the things in CCSVI's favor is that it came out of research and that there are studies to back it up as a promising line of inquiry.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby JCB » Fri May 07, 2010 1:37 pm

That is exactly why I think studies will be fast tracked. It won't be fast enough for many of us that are growing weaker by the day, but within 6 months I think we will know a lot more. I agree with the science behind it, it just makes sense. That science is what is propelling CCSVI at the pace it is.
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Postby Liber8 » Fri May 07, 2010 8:59 pm

Well I guess I better give a reason for throwing My Neuro (Birnbaum) to the wolves. First I want to let MSers know that if you are looking for a referal I would bet my paycheck you won't get it from any NEURO at The Minneappolis Clinic of Neurology in my area. The reason I say that is because Gary Birnbaum is the Director there still if I am correct and he is not giving them out.

I dont want MSers wasting their time and energy on places that are not going to help them.

2nd. If I didn't understand the science behind CCSVI I would not give a referal either. But you can damn well bet that I would use all the resources at my finger tips to find out if it was for real or not so that when I told patients I wasn't giving them a referal I had a reason. And he is very well connected. He can get all the info he needs at a short amount of time to make a decision.

3rd and what I think is the most important reason. Start calling them out! If you know one that won't help MSers, then put his/her name in lights so we all know not to give them our business. And if you know one that gives referalls let us know.

Maybe they will start to realize that we are going to end up giving our business to those NEUROS that want to help us.

Sorry Gary, but if your not part of the solution, your part of the problem.
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Postby Cece » Sat May 08, 2010 8:29 am

Liber8 wrote: First I want to let MSers know that if you are looking for a referal I would bet my paycheck you won't get it from any NEURO at The Minneappolis Clinic of Neurology in my area.

I can second this, at least at this time...my doc, Jonathon Caulkwood, is the one who told me about CCSVI theory a year ago. No joke. He didn't use the term CCSVI, but for the first time ever he took an interest in my I-think-my-car-accident-caused-my-m.s. story (at 16 I was a poor driver :) and managed a slow acccident where the car flipped over...I was upside down for awhile, then fell on my head when I unbuckled...a few weeks later developed my first m.s. symptoms...Dr. Caulkwood talked about blood flow and new breakthroughs and iron and that it was all too soon...something we're hearing plenty of now, but this was over a year ago).

Anyway, when I brought it up in February, he had nothing good to say this time around. And again: it's all too soon...but I say if you can get yourself in a study and understand the possible risks, it is not too soon at all.

I happen to really like Dr. Caulkwood, he's smart and empathic and that's about as good as it gets, but yeah, don't bring up CCSVI unless you want to get an earful.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Liber8 » Sat May 08, 2010 8:53 am

I recently got an invitation fro Caulkwood to attend some kind of "what can you do to help your MS" meeting late last month. I don't have time to waste on it.

Even though I don't agree with Birnbaum I have to keep seeing him on my yearly until I find one that will prescribe my meds and is a CCSVI advocate.

My point in the previous post was that the Neuros seem to have banded together to not give referrals for testing for CCSVI until they have seen clinical study evidence. I think that as patients we need to band together and all migrate towards the ones that will either give referrals or at the very least talk openly and positively about it. And yes I know that studies have already been done but that does not seem to interest theNeuros.
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Postby Cece » Sat May 08, 2010 8:58 am

Liber8 wrote:II think that as patients we need to band together and all migrate towards the ones that will either give referrals or at the very least talk openly and positively about it.

That makes a lot of sense...not that there are many such neuros now, but as study results start coming in, there will be some neuros that are holdouts and some that break first, I would think.
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