CCSVI...I have it...but do I have MS??

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CCSVI...I have it...but do I have MS??

Postby IMandrea » Tue Apr 24, 2012 6:59 pm

Hi everyone. Been reading alot on here. I am an interventional radiology nurse, treating ccsvi patients-all with MS. I had optic neuritis 5 years ago that lasted 2 weeks. Had 2 brain lesions that came and went. Have had mild symtpoms that come and go since then. Now with fatigue and forgetfullness and some left hand heaviness.
I asked my IR doctor to do a venogram on me after an ultrasound of my jugulars looked suspicious.
I have a 90% stenosed azygos, 50 % left jugular, 70% right jugular, 50% left renal and 70% left iliac. None treated yet as I need to get insurance approval for angioplasty.

Here's my question --- if I have ccsvi do i also have MS? I have a neurology appointment tomorrow but am nervous he may think I'm nuts for getting a venogram.

Any thoughts?
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Re: CCSVI...I have it...but do I have MS??

Postby lyndacarol » Tue Apr 24, 2012 7:59 pm

IMandrea wrote:Hi everyone. Been reading alot on here. I am an interventional radiology nurse, treating ccsvi patients-all with MS. I had optic neuritis 5 years ago that lasted 2 weeks. Had 2 brain lesions that came and went. Have had mild symtpoms that come and go since then. Now with fatigue and forgetfullness and some left hand heaviness.
I asked my IR doctor to do a venogram on me after an ultrasound of my jugulars looked suspicious.
I have a 90% stenosed azygos, 50 % left jugular, 70% right jugular, 50% left renal and 70% left iliac. None treated yet as I need to get insurance approval for angioplasty.

Here's my question --- if I have ccsvi do i also have MS? I have a neurology appointment tomorrow but am nervous he may think I'm nuts for getting a venogram.

Any thoughts?


Welcome to ThisIsMS, Andrea.

There are some people who believe that MS and CCSVI are directly related. However, I do not think that the two are necessarily linked. In addition, the evidence for this hypothesis is not 100% accepted by all scientists.
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Re: CCSVI...I have it...but do I have MS??

Postby DougL » Wed Apr 25, 2012 4:28 am

IMandrea wrote:--- if I have ccsvi do i also have MS? ... Any thoughts?


i do not think a diagnosis of CCSVI is a diagnosis of MS.

i think CCSVI is a problem that many people have. some are able to live a long life with no real side affects. others are not so lucky and develop problems.

i wish you best of luck with your appointments.
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Re: CCSVI...I have it...but do I have MS??

Postby Campus » Wed Apr 25, 2012 7:28 am

What does Multiple Sclerosis mean? MS means Multiple Lesions or scaring (Sclerosis) on the brain. If you have no lesions then you don’t have MS. These symptoms that you are having are due to the fact that you do not have proper blood flow in your body. You do not want to be tagged with the label MS, it only makes your life more difficult. Here in Canada if you have been labeled as a person with MS, no Doctor wants anything to do with you especially if you have any involvement with CCSVI. Angioplasty is legal and it is done here in Canada everyday but if you have MS you are not allowed to have the procedure. Have your angioplasty and you will find that your problems will disappear. The earlier you have it done the better, the worse the scaring on the brain and or spinal column the least likely it is for improvements. Speaking out of experience as a person with secondary progressive MS and I have had angio twice now and have had a lot of improvement but I will never be able to walk again without a walker. :smile: Good Luck
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Re: CCSVI...I have it...but do I have MS??

Postby msscooter » Wed Apr 25, 2012 11:32 am

What a great question to ask , IMandrea! I attended the ISNVD conference and the SIR conference and the AAC conference and will be attending the Hubbard Conference in May in San Diego. having listened to about 80 individual presentations on CCSVI in the last year and I could not answer your question with scientific confidence. I do have the strong feeling however that CCSVI is a very important in MS and a host of other diseases and conditions. 35 potential candidates were listed at ISNVD. The problem is we just don't know enough yet, but the science is very very exciting and it is clear that the many of the unknowns can be answered quickly with appropriate research. Like what is normal?

Neurologists, generally are culturally and philosophically not prepared for this new way of looking at and treating neurological disease. As an IR nurse you probably saw how the OB-GYNs reacted to the treatment of fibroids, and oncologists react with new interventions in their arena too. So be kind and gentle with your neurologist but have a healthy dose of skepticism too with what they tell you about MS or CCSVI. Read Marie Rhodes's book (http://www.CCSVIbook.com). The MS drugs are associated with high morbidity and mortality. if your symptoms are mild and you can wait. do so for both DMD drugs and CCSVI treatment. there is a lot of research going on now and treatments will be better soon. educate yourself. Talk to your IR and other colleagues.

there is a wealth of good knowledge here and at CCSVI_tracking.com and on facebook. (CCSVI in Multiple Sclerosis and other pages). I'm sorry that you have MS and I hope that treating your CCSVI will help your symptoms should you choose that path. It helped me but the path is a rocky one now and best done in the context of a careful research setting or a cautious expert IR. we are pioneers. AS the luminary IR, Mike Dake, said recently in this interview. The association is undeniable but we need research to answer the big questions. http://abclocal.go.com/kgo/video?id=8596502
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Re: CCSVI...I have it...but do I have MS??

Postby IMandrea » Wed Apr 25, 2012 7:02 pm

msscooter...so, so very helpful. When I have the angioplasty done, I will be joining the hubbard study, as my IR doctor is one of those registered as an investigator. I appreciate your words...I have some more reading ahead of me!
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Re: CCSVI...I have it...but do I have MS??

Postby msscooter » Wed Apr 25, 2012 8:16 pm

I'd like to clarify that CCSVI_tracking.com is NOT scientifically valid. not blinded etc. however it is a well thought out registry dating back to the early days and keeps monthly updates. It is an honest open source effort . Understand the limitations and look for trends.
I have been MSsooter but need to change my name after libration. Don't use a scooter anymore! I am LaFemmeMSketeer!
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Re: CCSVI...I have it...but do I have MS??

Postby Dovechick » Wed Apr 25, 2012 10:17 pm

hi Andrea and welcome. We Mostly are not doctors here so we can't really answer your question. Even doctors find it a tough one to answer. People without an ms diagnosis can have lesions and CCSVI. As someone said Multiple Sclrosis means many scars... just that it does not determine why you have these scars or what your outcome might be.
I understand that living in uncertainty can be hellish, but to be quite honest having a diagnosis brings its own problems. If you are seeing a neurologist shortly you are one the road to a diagnosis, but it may be some months before you get an answer. You are somewhat lucky to arrive at this possible diagnosis point at this time in history. You have at least a chance of effective treatment whether you have MS or not.
There has been a wealth of evidence that the circulation in the brain has been responsible for a number of neurological syndromes with more emerging all the time, unfortunately neurologist are stuck in an auto-immune theory which has yet not been proven or been successful in treating the symptoms. So don't be too dependent on the neurologist's information... It may well be out of date. Someone suggested you read Marie Rhodes book. She is a member here and a person with MS (pwMS) herself. she has been treated for CCSVI. She knows what she is talking about. If you want to get a bargain buy the e book rather than the hard copy it costs half the price and Marie gets a better proportion of the revenue... By the way she gives a proportion of her revenue to a CCSVI charity... Good luck.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Re: CCSVI...I have it...but do I have MS??

Postby msscooter » Thu Apr 26, 2012 9:40 am

I think Marie gets the most if you buy at her site CCSVI.com. (But please advise us , Marie) I think she will do discounts for 10 or more so you can help your local bookstores get a decent price not otherwise available to them (They pay Amazon retail-Go figure?) We have to support this excellent scholarly effort. I understand that because she is not at a University with free access to peer reviewed journals, it cost her thousands to buy reprints for all the references she sited in this book. she has not even paid those costs back yet. She is a great writer. clear and simple. better if you understand medicine but not required to understand her argument and her reasons. Different chapters have different levels of technical information, which is spelled out. You will enjoy it all, IMandrea since you have medical training.
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Re: CCSVI...I have it...but do I have MS??

Postby FLJhawk » Mon Apr 30, 2012 5:33 pm

CCSVI is not a sure-thing cure. I had it back in March and have not had any overall improvements but, as I have mild MS, I was primarily looking for stability. Too soon to tell on that.

There is a CCSVI board here, so I suggest you go there and get involved. There are thousands of posts you can start reading. I do think that since you have the blockages you should consider treatment, independent of any MS dx.
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Re: CCSVI...I have it...but do I have MS??

Postby Pesho » Tue May 01, 2012 2:15 pm

I definitely have MS, but my veins are perfect. Also from the research papers it becomes clear, that a lot of people have CCSVI without any other problems.
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