This Is MS Multiple Sclerosis Community: Knowledge & Support

Not read this yet or the reviews

Going to get myself a cup of coffee and enjoy it!

There are no words for this. how absolutely wonderful. I

I hope you get a little more on the aspect regarding the blood flow.

This is one reason that Dr Dake needs a successful sonographer to do his dopplers. He can't test the DCV -deep cerebral veins-- right now and does not have confirmation that people have turbulence free flow in that area. For example, I know he left some stenosis on one side on me, might there still be some turbulent flow? I am not anxious for a revision and I hope that the fact my collaterals disappeared means that by and large my circulation is good and I'll be OK, but these details will not all be clarified for a while.

But you know what? I do not even care at least they are on it!! At least I know where to look for answers.

There is no mention of ongoing immune suppression in any of these preview presentations, it will be interesting to see if anyone has an opinion that such is needed.

I still take copaxone, reasoning that it stops MS in EAE so if there was some accidental autoimmune feature to my MS, that may end it as it does in mice. Really now that the brain is not getting whacked all the time so that new damage is constantly stimulating new immune activation, that may be a great approach if it were needed...........
marie

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no, not exactly, guys from the swiss/kiwi/german/french/italian ccsvi-forum have posted here before. one interesting thing is that there will be (a rather short) presentation of Zamboni et al.'s finding at the annual ECTRISM-meeting in Duesseldorf on Sept. 10. ECTRISM is the "European Committee for the Treatment and Research in Multiple Sclerosis", the largest body of research on MS in Europe. It is in general pretty industry related (and -sponsored) but at least they are not totally denying ccsvi.

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This is going to be absolutely HUGE when this does take off.

MS is such a high profile disease.

After reading your other post last night I just couldn't sleep. I feel that this is IT! I just know it in my gut. It is beyond exciting, it's earth-shattering.

Says it is a "poster topic". What exactly does that mean. No presentation, just written material?

A quote from the published research



Mixed feeling about this, seems to be less optimistic for progressive MS?

WOW. Did someone already say that?

Will be walking around with a big grin for a good long while.

Joan, thanks so much for the updates. From your fingers to many, many eyes and ears. Can't wait for the next posting.

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diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

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SP and PP people will want more than this of course but can everyone please remember what a huge deal it would be to even STOP progression?

Mel was diagnosed 2 years ago last week and there was absolutely nothing even on the horizon that claimed that even for RR. Slow many for RR but short of monthly chemo what's been useful at all for SP/PP? Absolutely nothing.

the best was a mylelin basic protein analog that helped some 60% of patients, I believe this claim for SP/PP was quietly dropped.
MBP 8000 or something like that.

If this indeed could stop progression that is amazing and opens the possibilty of repair later on as those technologies (stem cell?) mature.

Even more reason if you are early stage MS to get this checked out before permanent damage is done.

OK, and now for what I was going to write!! This is the huge thing for me. Being one of the ones that hasn't seemed to respond to this, it makes me yearn for that type of test. Anyone up for a trip to Italy? I'm going to cover this big time with Dake next week. I really want to spend some time discussing why we aren't doing these tests and see what we CAN do in regards to measuring flow. I feel that the stents placed in me have done nothing to date but put my shoulder out of joint. I got a glimpse, but that feels gone now, because I'm sure the one side the stents were put on had some better flow, but if people are seeing results and I'm not then I have to try and question why. My hope is that what he may have learned he can apply to me. To date, I've had a couple of really, really good days that I don't feel I'd have been capable of before, but something is still going on for sure. Don't know what and don't feel like I'm relapsing (knock on wood), but whatever helped for those few days went bye bye.

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As far as I can see this means that different approaches & researches are summarized under a certain topic, here "disease modifying therapy - general". There's 13 papers to be presented under a common flag, which means that everyone has about 7 minutes to detail their findings. Anyway - it's a start. CCSVI has been totally neglected by the medicine-establishment in Germany until now. An "expert" on one of the leading industry-sponsored ms-forums dismissed it as beeing fairly ungrounded & exotic. Industry resistance will of course continue to pose a major obstacle for treatment according to Zamboni, Dake & Schelling.

Cheer wrote


Hey all - Dr. D. is talking about my daughter. I will catch up later - I am off to China

Sharon

Here is some more information on Zamboni at ECTRIMS:

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Sharon,

Dr Dake was telling my huband and me about your daughter when he came in to release me on Friday. No names of course.

I told my son, who has headaches like me, that he needs to get an MRI and just make sure there are no lesions. It scares me.

Cat

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.