Catfreak's Update

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

Catfreak's Update

Postby catfreak » Mon Feb 01, 2010 1:45 pm

I am having my Tysabri Infusion right now. Already had my MRI today and will see my Neuro this after noon. I want to stop the Tysabri, so we will see.

Want to see what my Dr says about CCSVI since my last visit 3 months ago. I hope it's good things so I can move on from this Tysabri. I want to know how may have asked him about CCSVI and if he has told anyone he has a patient that has had stent placement??

Later,

Cat
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.
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Re: Catfreak's Update

Postby jr5646 » Mon Feb 01, 2010 2:42 pm

Good luck, Cat.. I too am ready to discontinue TY (33 or 34 infusions so far)... it's not helping me any longer.. even though I havn't had ccsvi testing / treatment yet, I'm going to ask mine about ldn for now.. outta go over like a lead balloon,, haha Just tell him you're scared of the pml risk.

Anyway, can't wait to hear what he says about ccsvi...

Keep us posted.

-John
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Postby ozarkcanoer » Mon Feb 01, 2010 4:43 pm

Hi CatFreak,

I am interested in what your neuro says about your progress since your CCSVI procedure ! Good luck.

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Postby catfreak » Mon Feb 01, 2010 9:21 pm

Hi all,

My MRI was stable!! No changes!

Told the Doc I wanted to stop or at least take a vacation from the Tysabri. He reluctantly agreed to at least a vacation until I go back in mid-May. Oral meds should be out by then.

I asked if he'd had many questions about CCSVI and he said some. I wanted to know what he told patients when they asked and he said that he told them it was not proven at this time but like any other treatment it had to be tested and trialed. I told him I had to know that he was not dismissing the CCSVI and he said that he did not dismissed the idea at all but the Neuro community was not into the idea. He felt like this could be a breakthrough but until it is proven we have to keep working with the treatments that we have.

He said he went to a meeting in FL and a very well respected Neuro from Jacobs told them it was complete foolishness and had nothing to do with MS at all. This is what we are up against with CCSVI.

My husband told him either way I was a pioneer!! I am so glad he was totally with me on this.

JR5646 - My doc said no to LDN 3 months ago, he said he had not had good results with it and did not want me to risk it. I gave him the benefit of the doubt and OK.

Cat
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.
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Postby CureIous » Mon Feb 01, 2010 10:09 pm

catfreak wrote:
He said he went to a meeting in FL and a very well respected Neuro from Jacobs told them it was complete foolishness and had nothing to do with MS at all.

Cat


Never was one to be in awe of plaques on walls anyways ... :)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby prof8 » Mon Feb 01, 2010 10:10 pm

Hi Cat, I saw in your response to CureIous in his update that you are still MS-ey sometimes. Do you think the surgery has led to any changes for you at all? Would love to hear more detail!
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Postby JoyIsMyStrength » Mon Feb 01, 2010 10:28 pm

Hi Cat,

First of all you have the coolest avatar, that kitty makes me smile every time.

As for LDN you might let your doc know that the Director of the Univ. of S Florida Multiple Sclerosis Center, highly respected, prescribes it to MS patients who request it. He doesn't offer it up front necessarily but he's at least open to it. Just a thought. It's such a safe drug and I can't understand the big deal with these neuros. It took me a long time to find a doc who would let me try it. It hasn't done a lot for me personally but I do notice when I miss a dose.

Anyway I see my neuro on the 16th and am feeling a bit apprehensive because things have not gone well. At my request he is monitoring me on dairy free, gluten free, plus Swank diet, LDN and vitamin D. He's a way cool doctor. So far all I seem to do is decline which is very disappointing. I use a rollator around the house and a wheelchair the rest of the time plus the fingers on my left hand keep freezing up on me, after typing for awhile they tire to the point of being incapable of movement.

I don't say these things to whine but to ask you about Tysabri because I feel sure that's what the doc will recommend -- he kind of sees me on a "let's see how you do, hope you surprise me" basis right now with the natural approach. He seems to be pro-CCSVI and is going to begin some sort of trials but I don't have details yet plus I expect it will take some time before he can do anything for me as far as treatment. It's good news for sure but it's nothing immediate and I'm out of time.

There's a question in here somewhere, I promise! Here it is: If you were me, would you be open to trying Tysabri? Did it help? I tried Copaxone and Betaseron for 5 years but they made me feel far worse than I do even now so I'm not very excited about DMDs at this point.

My greatest wish is to hold off on doing anything and pushing for the CCSVI. However if I am unsuccessful in getting it done anytime soon, what would you do in my place? No pressure, just wondering. :-)

Thanks,
Pam
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Cat Talk

Postby Squeakycat » Tue Feb 02, 2010 1:22 am

From one cat to another, we cannot let malicious rumors such as the one being spread by your neuro go unchallenged. These things tend to have a life of their own. I just saw today that a library wrote up an overview of CCSVI relying on the deeply flawed National Post article and implying that Zamboni has only treated and tested his wife. They probably didn't mean to say that, but that's what they actually wrote.

I like cat fights so I'd be very inclined to push back very hard on your neuro to either give you the name of the unamed neuro from Jacobs who is supposedly trashing CCSVI so you can independently test the veracity of that assertion, or shut up.

Here's some ammunition should you choose to bare your claws, or for others who are undoubtedly going to hear the same unprofessional assertions.

FACT "Results of this preliminary study, which involved 16 relapsing-remitting MS patients and eight age-and-sex-matched healthy controls, showed that all the MS patients, but none of the controls, had chronic insufficient blood flow out of the brain," said Zivadinov.

N is small, but specificity is 100%. People with MS have CCSVI, and controls do not. That's a public statement on the subject from someone at Jacobs who has been intimately involved in the research. He is director of BNAC. It was the basis for launching the current larger study.

Public statements by real people carry a whole lot more weight than hearsay by unnamed sources. Name your source or you have just shown me that you have no credibility and are very unprofessionally.

FACT Absolutely stretches credibility that "an unnamed, but supposedly very well respected Neuro from Jacobs told them it was complete foolishness and had nothing to do with MS at all" when the director of BNAC is clearly quite positive. When someone throws out crap like this, they should be challenged on the spot to provide name, rank, serial number, place and date and told that without that information, what they have said has no credibility and is completely unprofessional.

FACT Robert Zivadinov, M.D., Ph.D., UB associate professor of neurology, director of the Buffalo Neuroimaging Analysis Center (BNAC) and principal investigator on the study said "If we can prove our hypothesis, that cerebrospinal venous insufficiency is the underlying cause of MS, it is going to change the face of how we understand MS."

Hardly slamming CCSVI and this is a real quote, by a named person that is easily verified.

FACT Michael Cain, M.D., professor and dean of the UB School of Medicine and Biomedical Sciences, said a positive outcome from this trial would have enormous implications for the treatment of MS. "Being able to identify those at risk of developing MS before symptoms take their toll could change the lives of millions of persons who now face inevitable lifestyle restrictions."

When the dean of the med school has positive things to say about the study, it really suggests that alleged negative statements from unnamed sources are most likely bullsh*t, or KittyKrunchies as we felines know it.

FACT Margaret Paroski, M.D., executive vice president and chief medical officer of Kaleida Health, parent of Buffalo General Hospital where the BNAC is located, commented: "Will Rogers once said, 'It isn't what we don't know that gives us trouble, it's what we do know that ain't so'. Challenging basic assumptions about diseases has lead to some very important discoveries.

Supposed statements of unnamed sources have no credibility when there are published statements like these by clearly senior officials at University of Buffalo and the director of the BNAC which is currently conducting a major follow on study.

Source for above facts and citation at end.

Neurologists Investigate Possible New Underlying Cause of MS

10/14/09, BUFFALO, NY – Neurologists at the University at Buffalo are beginning a research study that could overturn the prevailing wisdom on the cause of multiple sclerosis (MS).

The researchers will test the possibility that the symptoms of MS result from narrowing of the primary veins outside the skull, a condition called "chronic cerebrospinal venous insufficiency," or CCSVI. (For more details on the study, go to http://www.bnac.net/?page_id=517.)

CCSVI is a complex vascular condition discovered and described by Paolo Zamboni, M.D., from Italy's University of Ferrara. In the original Italian patients, CCSVI was found to be strongly associated with MS, increasing the risk of developing MS by 43 fold.

This narrowing restricts the normal outflow of blood from the brain, causing alterations in the blood flow patterns within the brain that eventually causes injury to brain tissue and degeneration of neurons.

"If we can prove our hypothesis, that cerebrospinal venous insufficiency is the underlying cause of MS," said Robert Zivadinov, M.D., Ph.D., UB associate professor of neurology, director of the Buffalo Neuroimaging Analysis Center (BNAC) and principal investigator on the study, "it is going to change the face of how we understand MS."

Michael Cain, M.D., professor and dean of the UB School of Medicine and Biomedical Sciences, said a positive outcome from this trial would have enormous implications for the treatment of MS. "Being able to identify those at risk of developing MS before symptoms take their toll could change the lives of millions of persons who now face inevitable lifestyle restrictions."

Margaret Paroski, M.D., executive vice president and chief medical officer of Kaleida Health, parent of Buffalo General Hospital where the BNAC is located, commented: "Will Rogers once said, 'It isn't what we don't know that gives us trouble, it's what we do know that ain't so'. Challenging basic assumptions about diseases has lead to some very important discoveries.

"When I was in medical school, we thought peptic ulcer disease was due to stress. We now know that 80 percent of cases are due to a bacterial infection. Dr. Zivadinov's work may lead to a whole different way of thinking about multiple sclerosis."

The preliminary findings were based on a pilot study at the BNAC headed by Zivadinov, and at the Universities of Ferrara and Bologna, Italy, directed by Zamboni and Fabrizio Salvi, M.D, respectively. The study showed that several abnormalities affecting the predominant pathways that return venous blood from the brain to the heart occurred more frequently in MS patients than in controls.

This research, supported by the Hilarescere Foundation of Italy and the BNAC, was conducted to replicate the findings of the Italian investigators.

"Results of this preliminary study, which involved 16 relapsing-remitting MS patients and eight age-and-sex-matched healthy controls, showed that all the MS patients, but none of the controls, had chronic insufficient blood flow out of the brain," said Zivadinov.

Bianca Weinstock-Guttman, M.D., UB associate professor of neurology and a co-principal investigator on the pilot study, added: "The images from this study were acquired using a method called Doppler ultrasound. The method identified anomalies in the venous blood flow associated with strictures, malformed valves and peculiar webs within the large veins of the neck and brain"

Weinstock-Guttman directs the Baird Multiple Sclerosis Center at the Jacobs Neurological Institute (JNI), UB's Department of Neurology. The JNI and BNAC are located in Buffalo General Hospital of Kaleida Health.

Advanced magnetic resonance imaging scanning (MRI) of the MS study patients conducted at the BNAC also identified distinct areas of iron deposits in the brain, and showed that those deposits may be associated with the location of MS lesions and sites of impaired drainage. The scans also revealed increased brain atrophy and changes in the flow of cerebrospinal fluid in the MS patients.

These results, which form the basis of the current larger investigation, were presented at the 25th Congress of the European Committee for Treatment and Research in Multiple Sclerosis held in September in Dusseldorf, Germany

The new study will involve 1,600 adults and 100 children. The cohort will be comprised of 1,100 patients who were diagnosed with possible or definite MS, 300 age-and-sex matched normal controls, and 300 patients with other autoimmune and neurodegenerative diseases. Enrollment in the study has begun and will continue for two years. MS patients from across the U.S. are eligible to participate in the study.

"The prevailing wisdom that central nervous system damage in MS is predominantly the result of abnormal immune responses against the patient's nervous tissue has been challenged by research findings, which have demonstrated a significant neurodegenerative component in MS and the progressive loss of neurons" said Zivadinov.

However, these inflammatory and neurodegenerative processes occur concurrently in MS and vary considerably among patients, making it difficult to identify the cause, or causes of the disease. Consequently, the origin and development of MS remains poorly understood, and its cause remains elusive."

To determine if these preliminary findings can be repeated, Zivadinov and Weinstock-Guttman organized the present study, which will evaluate both the velocity of blood flow through both the brain's blood vessels and the extracranial veins, using Doppler ultrasound.

The technical name of the study is "combined transcranial and extracranial venous Doppler (CTEVD) evaluation in MS and related diseases".

All study subjects will undergo a general clinical examination and a Doppler scan of the head and neck to acquire images of the direction of venous blood flow in different body postures. Participants also will provide blood samples, and complete an extensive environmental questionnaire to identify potential MS risk factors.

All MS patients will undergo MRI of the brain to measure iron deposits in lesions and surrounding areas of the brain using a method called susceptibility-weighted imaging. Iron findings on these images will be related to neuropsychological symptoms. The neuropsychological part of the study will be conducted by Ralph Benedict, Ph.D., professor of neurology and psychiatry at the JNI, UB's Department of Neurology.

A sub-cohort of 250 consecutive patients and controls will undergo MRI of the veins of the neck to confirm diagnosis of CCSVI.

Murali Ramanathan, Ph.D., associate professor in the Department of Pharmaceutical Sciences, UB School of Pharmacy and Pharmaceutical Sciences, will analyze blood samples for proteins and soluble factors associated with central nervous system injury. He also will be looking for other factors of interest in MS research, such as vitamin D metabolites and cigarette smoking, which have been linked to increased risk for developing MS as well as MS disease progression.

The data will be unblinded at three predetermined time-points, with the initial unblinding scheduled for November 2009. For more details on the study, send an email to ctevd@bnac.net.

Zivadinov said results of the study may lead to a larger multicenter North-American trial that will evaluate the occurrence of CCSVI in MS.

The University at Buffalo is a premier research-intensive public university, a flagship institution in the State University of New York system and its largest and most comprehensive campus. UB's more than 28,000 students pursue their academic interests through more than 300 undergraduate, graduate and professional degree programs. Founded in 1846, the University at Buffalo is a member of the Association of American Universities.

http://www.buffalo.edu/research/article.html?id=105620009
Retrieved at 0157 2/2/2010


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Postby catfreak » Tue Feb 02, 2010 11:55 am

Pam,

Yes I would try Tysabri again if I was in the place I was before (rebif). I does not make everyone feel terrible. I wanted off due to both the all over bad feeling I have for 2 or 3 weeks after the infusion and the PML issues. I had 11 treatments. Don't look over it as an option until CCSVI is more readily available.

Cat
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.
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Postby catfreak » Tue Feb 02, 2010 12:15 pm

SqueakyCat!

Cool name.

Maybe I did not make my post clear enough. My doc was not spreading malicious rumors, he was merely letting me know what is being said at these neuro conferences. I appreciated him honestly telling me what was going on instead of not sharing this with me. He is very open to the CCSVI idea. He shared several instances of ideas that the neuro world laughed at in the past and then became hugh successes and he hopes to see CCSVI succeed. But on the other hand he has to deal with the here and now for his patients until CCSVI trials are done and proven. He knows not everyone will or can get on a plane and go to Stanford like I did!!

I have so much respect for him and his advice and he respects my feeling and my ideas also. He has never pushed me to do anything I was not fully on board with.

Also, time will shut the mouth of this neuro at Jacobs since they are doing their own study. Hopefully we will hear from that soon. He is probably tied up by the purse strings of some drug company!! 8O

Hang in there Squeak!

Cat
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.
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Postby catfreak » Tue Feb 02, 2010 12:28 pm

Prof8,

I think my feeling MS'ey is really the Tysabri. I will know in a month, give or take a week, when I am normally suppose to get a treatment if I feel better.

On the other hand, I am definetly stronger and sturdier than before the CCSVI. My left side is still a bit weak but much better than before.

I would not change a thing!! :D

Cat
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.
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Postby catfreak » Sat Apr 03, 2010 7:08 pm

Wanted to update on my status.

Today was beautiful and I spent the afternoon on my hands and knees digging in my raised bed vegetable garden. It was hot outside and I raked, weeded and planted.

I got tired but not like last year before the stent procedure. It was nice to not feel like a zombie after being outside in the heat working in the yard. I hope I can do even more next time and feel this good after.

Cat
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.
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Postby cheerleader » Sat Apr 03, 2010 8:18 pm

catfreak wrote: It was nice to not feel like a zombie after being outside in the heat working in the yard. I hope I can do even more next time and feel this good after.

Cat


:)

Nice to hear, Cat. You deserve some springtime fun.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CRHInv » Sat Apr 03, 2010 9:49 pm

I am so glad you had this wonderful day. Your day reminds me of Lew's last blog entry about having a wonderful 'normal' day.
I wish you many more normal days!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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CCSVI

Postby Opera » Sat Apr 03, 2010 10:20 pm

Catfreak

Is it OK to ask whether you have gone off Tysabris. I thought you had said in an earlier post that you would suspend it for a while and see.

Great to hear of the positive outcome for you of CCSVI treatment .

Best wishes.
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