Update from NIH: I do have stenosis, I don't have MS...

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

Postby bibliotekaren » Tue Nov 24, 2009 10:01 am

Marc, I challenge you to write something that can indeed put us to sleep. With your gift, I don't think you could!

More confirmation of the nebulous nature of that with which we're dealing. I've never considered MS one disease and believe that there are likely multiple contributing scenarios for someone arriving at the presumed MS diagnosis. My situation is considered atypical with shaky answers at best and I continue to wonder as well as seek answers. I'm not considered a DMD candidate. Yet, this train hasn't been losing any speed.

I've been a believer, for me, in CCSVI since I first came across it. This is based on many years of some specific symptoms and a cranial surgery. However, a stenosis in your location would be pause for thought. Like someone else here said -- is angioplasty an option?

Marc, I am glad that you are positioned to shake the tree to the extent that you're doing and that you're sharing this information to benefit others. It's much appreciated.

I sincerely wish you the best and some solutions as you continue your journey.

Donna
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Postby patientx » Tue Nov 24, 2009 10:43 am

Marc,

Thanks for the thorough, informative post. Sorry you didn't find more comforting answers and that your quest continues. Also, sorry the disease hasn't given you a break.

Hope that the doctors involved are finally able to help you.
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Postby Loobie » Tue Nov 24, 2009 11:06 am

Dude you have been through the proverbial wringer. Wow, what a tale. It's no small feat that you can keep track of all of this, it just amazes me as I've had a hard time somtimes remembering diagnosis details and stuff and I'm not even close to atypical.

I totally understand and can fully relate to the time is of the essence deal. I have not even a hint of the disability you are dealing with, yet I too felt that I had to get this done and "roll the dice" if you will.

Whatever decision you make I wish you well and hope that you can get something concrete to hold on to before long. I know what it felt like for me after I made the decision in the vacuum of "proof". It uplifted me and still has some of those same effects.

I must admit I fancy myself a halfway decent writer, but after I read your blog I come away thinking "man I wish I could write like that". No matter what's going on with your body, you are an excellent writer and can pull a reader in in a second flat. I truly admire your courage and your ability to think critically about all of this and seem to really be able to keep it in your head. Good luck my friend.
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Postby gibbledygook » Tue Nov 24, 2009 12:40 pm

Yes, thank you Kamikaze. Couldn't they balloon the stenosis? Or perhaps we need to discuss the bony area with an orthopedic specialist. Can one laser away a bit of bone like that? Or remove it surgically? But then of course you'll be involving vascular specialists, orthopedics and neurologists. Quel horreur!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby IHateMS » Tue Nov 24, 2009 3:20 pm

marc.

did u have an abnormal visual evoked potentials or optic neuritis?
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Postby marcstck » Tue Nov 24, 2009 7:39 pm

Thanks for all the expressions of concern and the many kind words. They're very much appreciated.

I'd like to respond to each of your questions individually, but frankly, that would be a bit too exhausting. So, I'll try to cover all of your questions in this one post.

In order to be given a diagnosis of "clinically definite multiple sclerosis", a patient must fit into a very specific set of diagnostic criteria (the updated McDonald criteria). These criteria can be found here:

http://en.wikipedia.org/wiki/McDonald_criteria

Given my imaging and diagnostic test results, I definitely do not fit the criteria for Primary Progressive Multiple Sclerosis. These criteria were originally designed to facilitate the inclusion/exclusion of patients into clinical trials, but are also used to identify patients whose cases warrant and require further investigation. I'm definitely one of those patients.

It's long been known that vascular issues can cause neurodegeneration. Decades before CCSVI was even a notion, neurologic vasculitis was a known and documented disease that could often be mistaken for MS. Vasculitis can cause lesions that appear identical to MS lesions on MRIs, and its victims can suffer from relapsing remitting or progressive courses of disease. The immune response seen in MS patients is absent in vasculitis, and vasculitis responds to a variety of therapies. In any discussion of the differential diagnosis of MS, vasculitis is always prominently represented. Keep in mind, vasculitis is not CCSVI, but a recognized and separate disease well known to medical science. A great paper on the differential diagnosis of MS can be found here:

http://www.neurology.wisc.edu/publicati ... euro_2.pdf

Another vascular abnormality that can be mistaken for MS are arterial fistulas, which usually create problems in the spine.

I'm in total agreement with those of you who have said that MS is very likely not one condition. I believe that MS is a syndrome, a collection of different diseases that share common symptoms and physical manifestations. Having said that, there are dozens of diseases that can be misdiagnosed as MS. This is one of the main reasons that Dr. Zamboni's research has been met by skepticism at the National Institutes of Health.

The initial reason I was seen by the NIH was to participate in a "Natural History of MS" study, being conducted specifically because the NIH was finding that patients misdiagnosed with MS were skewing the results of many of their MS research studies. The purpose of the Natural History study is to identify a pool of patients that the NIH is confident has MS, for use in future studies. Dr. Zamboni's claim that 100% of the MS patients he imaged exhibited stenosis throws a huge red flags for MS researchers, simply because in any sizable group of MS patients there will be a significant number who have been misdiagnosed. Due to this population of misdiagnosed patients, it would be virtually impossible to find 100% of any trait across a sizable portion of MS patients. It is the very heterogeneous nature of the disease, and the fact that an MS diagnosis must be made clinically, that makes such a claim highly improbable, if not impossible.

Hopefully, studies already underway, and those in the near future, will help to clear up this picture. Perhaps CCSVI will one day be considered its own disease, separate and apart from Multiple Sclerosis.

Because of the anatomical position of my own area of stenosis, which is between two bony structures, it is unlikely that balloon angioplasty would have any lasting effect. This location also makes stenting the area difficult or impossible, and increases the danger involved in any such effort. I've been told this independently by two different highly regarded radiologists, despite Dr. Dake's advising me to stent the stenosis (along with a stenosis in the right jugular that no other radiologist has identified). This is not to cast aspersions on Dr. Dake, whose help has been immeasurable in furthering the cause of CCSVI, but it has raised some questions in my mind. As said in my initial post, if the NIH ultimately decides that the stenosis is not related to my neurodegeneration, I will have some very difficult decisions to make.

I have forwarded Dr. Haacke's suggested MRI protocols to the NIH, in the hopes that they will consider them for any further imaging they decide to do. Of course, the NIH is likely to come up with their own standards, but I've found them to be quite responsive to well researched suggestions. I had an MRI of my neck done last week, to look for soft tissue abnormalities that might be contributing to my vascular issues. I'll be very surprised if this MRI shows anything out of the ordinary, and I'm expecting that the NIH will follow it up with a battery of further imaging studies.

I have been promised that the NIH will not "drop me" until they're satisfied that they've explored every avenue of investigation, but they cannot guarantee that they'll ever come up with a suitable diagnosis. Whatever I'm suffering from maybe too atypical to properly classify, or it could be a condition that's unique to my physiology and life history. My hope is that they will determine that the stenosis is relevant, and will develop a strategy to address it.

There is no better medical facility in the world to be poked and prodded by, and I've been nothing but impressed by all aspects of the facility and personnel in Bethesda, from top to bottom. I consider myself very lucky to be in their hands, and in the hands of my primary treating neurologist here in New York, who is a well-known and respected researcher in his own right.

It would be nice to finally get some answers, though...
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Postby ozarkcanoer » Tue Nov 24, 2009 8:04 pm

Marc, I am impressed by your well reasoned post. It may very well be that there is a subset of MS patients who have Venous Multiple Sclerosis. And there may be other causes for this syndrome. I have been very excited and supportive of CCSVI. My neuro was at NIH for years before he came back to his home town of St Louis. I respect him very much. I had an appointment with him a week and a half ago and I talked to him about CCSVI. He didn't say yes or no to CCSVI. He didn't tell met not to participate in Dr Haacke's Detroit study, but he willingly sent my MS information to Dr Haacke so I can go to Detroit and get the scans via Dr Haacke's protocol. My PCP told me not to get too excited about CCSVI. Well I am excited. Maybe hope is good for all of us here. If CCSVI turns out to be a blind alley... we will have to adjust. But this is a new way to look at MS and seems promising. The blinded study by Zivadinov at Buffalo seems like a step in the right direction. Maybe the Buffalo study will find other classes of MS that do not fit the CCSVI paradigm. However Dr Zivadinov seemed very sure of himself on the documentary. I know that only time will tell.

One thing that will always be good about the CCSVI paradigm is it makes people think differently about MS. The idea of drainage being so important to life. I never thought much about veins before !!!

ozark
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Postby MrSuccess » Tue Nov 24, 2009 10:26 pm

Marc , you have provided TIMS with a lot to think about. Your sources at NIH seem to be providing you with some good care. I am happy for you.

I am a bit concerned with the timing of your update.

The W5 feature has created a great deal of excitement . And rightly so.

With all due respect to your NIH experts .....other medical professionals are now getting on side with CCSVI. The Zamboni report is greatly anticipated . Are you suggesting the NIH opinions re CCSVI , trump the opinion of Dr. Zamboni et al ?







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Postby marcstck » Tue Nov 24, 2009 11:54 pm

MrSuccess wrote:Marc , you have provided TIMS with a lot to think about. Your sources at NIH seem to be providing you with some good care. I am happy for you.

I am a bit concerned with the timing of your update.

The W5 feature has created a great deal of excitement . And rightly so.

With all due respect to your NIH experts .....other medical professionals are now getting on side with CCSVI. The Zamboni report is greatly anticipated . Are you suggesting the NIH opinions re CCSVI , trump the opinion of Dr. Zamboni et al ?

Mr. Success


I'm not saying that anybody's opinion should trump anybody else's, but as with all scientific theories, no conclusion can be reached until initial results can be replicated by independent parties.

Despite the CTV report, which, after all, was a TV newsmagazine report, and not a balanced scientific exploration of CCSVI, there are still many unknowns regarding the theory. Most medical professionals, as scientists, are waiting for more objective research to either prove or disprove the theory.

The new Zamboni report, however much anticipated, is still only another report from the same source as the original information. It will do nothing to convince scientists who are awaiting independent verification of this data before reaching any conclusions.

Unlike most other medical professionals, whose livelihoods depend on the business of medicine, NIH doctors and researchers are entirely government funded, and are not biased by ties to pharmaceutical companies or any other for-profit entities. As such, I do hold their opinions in higher regard than many other medical experts. Though, as human beings, they certainly have their prejudices, I have found them to be more objective and less prone to presupposition than most of the other physicians I've interacted with. And, unfortunately, I've interacted with more than my share.

It's important not to let your enthusiasm for an idea cloud your objectivity about it. I would be thrilled beyond belief if CCSVI is proven true. Unfortunately, during my "MS career", I've seen similar enthusiasm expressed about a litany of theories/treatments regarding MS (the Vanderbilt antibiotic protocol, revimmune, and, at one time, even bee stings) none of which have turned out to be the panacea they were originally touted to be.

I'm not saying that CCSVI is not valid, or that those promoting it are corrupt financially, morally, or scientifically. My personal belief is that there is definitely something to the theory, and that, at the very least, for a subset of patients it will be the answer. It may very well cause a seismic shift in our understanding of not only MS, but other autoimmune disorders. Then again, it might not. There is much still to be learned...
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how to get enrolled in UB CCVSI study or get into see Dr. Da

Postby swibe » Wed Nov 25, 2009 6:39 am

Hi all, first time on this site. My lovely and amazing 24 year old daughter was diagnosed with RRMS almost 3 years ago. She is on Avonex and doing OK -- taking vit D eating low fat diet (all the things that would keep veins relaxed and open). I am a scientist and have been searching for the ANSWER to what the #*@! causes MS. CCVSI makes a whole lot of sense -- the correlation is astounding and the treatments that do work can all affect venous flow or the blood-brain barrier. But science moves slowly and is skeptical so it must grind on to be sure. Still the treatment is quite benign.

So how does one get into see Dr. Dake? How do you get enrolled in the UB study?
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Postby euphoniaa » Wed Nov 25, 2009 7:48 am

Hi Marc,

Thank you so much for the detailed posting of your experiences and for your insight - both here and on your blog. I join everyone in wishing you the very best outcome. Your thoughts are very much appreciated and thoroughly enjoyed. :)

Susan
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: how to get enrolled in UB CCVSI study or get into see Dr

Postby Loobie » Wed Nov 25, 2009 8:01 am

swibe wrote:Hi all, first time on this site. My lovely and amazing 24 year old daughter was diagnosed with RRMS almost 3 years ago. She is on Avonex and doing OK -- taking vit D eating low fat diet (all the things that would keep veins relaxed and open). I am a scientist and have been searching for the ANSWER to what the #*@! causes MS. CCVSI makes a whole lot of sense -- the correlation is astounding and the treatments that do work can all affect venous flow or the blood-brain barrier. But science moves slowly and is skeptical so it must grind on to be sure. Still the treatment is quite benign.

So how does one get into see Dr. Dake? How do you get enrolled in the UB study?


Check out the "stickys" at the top of the thread. There is all the information about how to get a hold of them there. I just had a friend of mine's daughter get the surgery from Dake, and she is also 24 and has been dx'd since 19. She is doing very well in the absence of any CRAB drugs and is excited to have done it. Good luck!
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Re: how to get enrolled in UB CCVSI study or get into see Dr

Postby Rokkit » Wed Nov 25, 2009 8:01 am

swibe wrote:So how does one get into see Dr. Dake? How do you get enrolled in the UB study?


Hi swibe! This thread is about marc's experience with the NIH. I doubt your question will get the attention it deserves here. I would suggest first browsing some of the stickies at the top of the forum if you haven't already. Then use the search function to find "Dr. Dake" or "Buffalo" (make sure to select "display results as posts"). And finally, start a new thread about your daughter's situation.

I hope this helps. Welcome!
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Postby Lyon » Wed Nov 25, 2009 3:42 pm

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Postby patientx » Wed Nov 25, 2009 5:55 pm

Somewhat along the lines of what Marc said about 100% of CDMS patients, one thing I've wondered about is the fact that 0 controls showed stenosis. We've all heard the reports that, on autopsy, some people have been shown to have MS lesions in their brains while never developing MS. I would think, given this, at least some of the control subjects should have venous stenoses. Maybe in a larger sample size, such as the Buffalo study, this will be true.

Also, in regard to Dr. Haacke's MRI protocols - I remember reading that at least one of his studies was funded by a grant from NIH. So maybe someone there is familiar with his work (though I know that is a big place, with many different departments).
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