Anywone who considers themselve(s) an expert onf CCSVI Help!

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

Anywone who considers themselve(s) an expert onf CCSVI Help!

Postby lesfromindy » Thu Jan 14, 2010 2:27 pm

I have had a very typical MS presentation but am termed after 20 years "very complicated" as my myoclonus has been very bad and spinal tap (with very highly elevated igg synthesis and index) didn't even show until 10 years followed by Oligoclonal Bands showing at 15 years time (which I realize doesn't mean they weren't there before)... Original Diagnosis 1993 made via SSEPs delayed in 2 sep. locations and the attacks over time and space at renowned MS center.... followed by 10 years of off and on not so major attacks (on Betaseron) - Diagnosis pulled in year 7 due to finding of a syrinx but new neurologist where I had moved said that had nothing to do with prior Optic neuritis (on scans), and SSEP showing delays above syrinx so with major attack and 10 year LP showing elevated igg plus many brain lesions based on MRI he ran in 2000, re diagnosed and on Copaxone.

With that Dr. another 6 years, developed terrible myoclonus and he felt all spinal related.. Oddly - hope you'll bear with me - MRA done in 2000 (when I had attack) of Neck arteries (COW) showed moderate stenosis of proximal right ICA. Predominance of basilar artery flow appears to be supplied by left vertebral with smalll right vertebral contribution - tortuosity of high left cervial ICA and Also found Atherosclerotic plaque/narrowing suspected of proximal ICA's bilaterally, probably not hemo.. significant on left but of moderate severity on right. Correllation with duplex ultrasound might be considered to exclude atrifactual apparent narrowing, especially in the right ICA.

I think an ICA is an Intra Cranial Artery? Is that even right? The COW results talk about tortuosity again but says unremarkable.

What is truly remarkable is that when I needed to move to a new city, my Neuro reran the 2000 MRI, this was 2006 and lo and behold, no lesions showed... This was a more modern machine but he stated he was an expert on MS (which he was) and anyone who saw all my facts, should treat me as such. Well, that didn't exactly happen. I also found out right before moving as I had a DVT in my leg extending the whole length and I had physical therapy the day before so it wasn't from being sedentary. Turns out I have Factor V Leiden which is a blood mutation making me more susceptible.

So I move here and at first good neurologist but then I have one who missed the Oligoclonal bands and termed me psychogenic (without telling me)... I finally have all my records and a neurologist who confirmed the complexity of my case and is calling my disease at this point "Demyelinating Disease"... as the brain MRI continues to be clean although she acknowleges my damage, i.e., drop foot, plus mild myoclonus and very bad ataxia.

I checked my last Thoracic MRI and will ask her about this next time but the syrinx has basically shrunk however; there is a new anomoly (actually this is 2 years old but I'm asking due to the vascular nature. It states There is mild linear enhancement along the ventral aspect of the inferior spinal cord which appears to be vascular in etiology and is of uncertain clinical significance".

This MRI was done while with the Neurologist who deemed me psygogenic and the brain MRI although only having one demyelinating plaque had something every one of my brain MRI's has which is a reference to "slow flow or hypoplasia of the right vertebral artery"

I have also had another DVT and Pulmonary Embolism and looked at the FAQ's and description of this new way of diagnosing MS and saw how they likened it to these things that happen in the legs and I have that pique-ing all over my ankles as the flow of blood is now as explained to me " the vessels cannot find the same route or blood supply" now I have these incredible browish reddish ankles...

I really wonder if what I am describing is what they are talking about as I tend to get confused with the terminology (oh by the way, a Neuropsychologist worked with me and declared me to have a memory worse than most PPWMS my age, processing much worse than PPWMS my age and absolutely NO somatization or psychogenic basis although I am depressed which I freely admit.

One thing I haven't found and maybe I haven't looked enough is it seems they have proven this new test proves that all diagnosed people with MS are coming up positive on this test - I wonder about people like me. I am not considered Possible MS or Probable, I am rather considered to have an Idiopathic Demyelinating Disease and I believe she is just waiting for me to have more evidence of lesions...

Would it benefit me to push this issue or am I misunderstanding the types of arteries they are talking about??

I realize this has been long but it has been a long journey for me and I find sometimes incredibly learned people on these boards. Please whatever you do, don't yell at me for a long post. I saw no way to make it shorter. I really just need and wish for some advice...
User avatar
Posts: 2
Joined: Wed Jan 13, 2010 4:00 pm


Postby vendredi5h » Thu Jan 14, 2010 7:37 pm

Oh! A Factor V Leiden sister! :) I've got two DVT too... but no pulmonaly embolism... and I'm not sad about this missing experience!

Hello lesfromindy, I'm surely not a CCSVI specialist and I'm not very sure what you are asking for in your post. First, you have to know that CCSVI concern veinous system, and that it's very different from arterial system. But even if your stenosis were at arteries, it does not mean your veins are OK, and that's why I suppose it would be a good thing to try to investigate this path. Maybe your "Idiopathic Demielinating Disease" is not at all related to CCSVI but again, if I was in your situation, I would investigate.

Anyway, HTH!

User avatar
Family Member
Posts: 38
Joined: Sat Oct 17, 2009 3:00 pm
Location: Quebec, Canada


Postby leetz » Thu Jan 14, 2010 7:53 pm

hello and advice to you would be to keep searching...get proper testing for venous by an interventionalist radiologist or a vascular radiologist NOT a NEUROradiologist!!! or a tech...also sounds like maybe het a second opinion from another neurologist...sometimes people focus too much on lesions when to me (i am no doctor) it sounds like the bands in your spinal fluid should be enough...i have 4 lesions and went undiagnosed for 8 years (they told me it was fibromyalgia)...spinal tap was what gave my diagnosis of MS...i had the olig-bands as well...GOD BLESS!

GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
User avatar
Family Elder
Posts: 301
Joined: Tue Oct 06, 2009 3:00 pm

Postby lesfromindy » Fri Jan 15, 2010 10:29 am

Thank you both for your posts - I had actually wondered if they used this test on anyone with a "possible diagnosis" or "probable MS" or a diagnosis such as mine which has been changed from MS to Demyelinating due to lesions no longer showing on the Brain....I read how they have proven it is 100% on those already diagnosed but wonder about the value they have found for people like me put on hold simply due to a change in MRI presentation - I don't know if the McDonald Criteria people are in agreement with this and Wow any neuro where I live now would laugh at 4 lesions as a diagnosis (I think it is quite enough so please don't take that the wrong way as you have met the diagnosis in my opinion with the oligoclonal bands) but the McDonald Criteria which they use as gospel around here demands no diagnosis without more than 9 specific types of lesions, etc. etc., in specific places and I think as you might agree that has hurt so many people.

I actually had one neurologist tell me that Oliogclonal bands were totally insignificant if the Brain MRI did not have many lesions especially with someone my age (49) - and it is sad but where I live they all seem to have come from the same university system and stay here- as I check each background and can't believe there is no one from outside this area that I can go to... I could move back to my other state to my original MS Doc but that is now financially impossible so that is why I was hoping a test like this might be available to someone like me to re-confirm the diagnosis. The current neurologist is more open to looking at other ideas but when you see a doctor every 3 months, it isn't that easy to get all your ideas discussed.

Thanks for your posts - I will keep reviewing this information - I am told that the anomoly which appears vascular in nature in my Thoracic spine wll be looked at soon (a new MRI) and I realize that is not this same test but will help me open up the conversation...

Thanks so very much
User avatar
Posts: 2
Joined: Wed Jan 13, 2010 4:00 pm

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service