This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi! I've been "lurking" long enough around these threads and I want to share what my nuero shared with me a few weeks ago. (I'll update my status when I figure it out!)

On first read, it sounded like a general, prepared response to all the inquiries about CCSVI that I was certain they would be receiving but I can tell they have put alot of thought into it. I've been their patient for a few years now and they genuinely seem to care, as I am sure most doctors do - we must cut them a little slack from time to time! (in fact, when I asked for LDN, there was no resistance at all! Boy, was I surprised!)

In fact, I think they might even "get it" a little! I believe they're saying "hurry up and wait!" until we know a little more. At least they don't completely trash CCSVI like some other responses I've seen here.

Unfortunately, the last paragraph put a little downer on the whole thing in regards to those of us who have spinal PPMS.

My "Medi-speak" is admittedly weak so I would welcome any other interpretations.



"This is an area that we have been following closely.



I have talked personally with Dr. Zamboni, first at this year's ECTRIMS meeting in Düsseldorf where his work and the work of Dr. Zivadinov were presented in abstract form. I also discussed further findings presented by Dr. Zamboni about a week ago at the annual Charcot foundation meetings in Portugal.



What bothers me about the work is the claim that these vascular abnormalities are found in all patients with multiple sclerosis and in no one else. I know of no disease, other than possibly a few infectious diseases, where anything is absolute. This seems to be particularly true for multiple sclerosis which is such a heterogeneous process. I also have a difficult time understanding how this presumably congenital collection of venous anomalies is then associated with an obvious secondary immunopathogenesis over time. Even Dr. Zamboni agrees that there must be some secondary immunopathogenesis component or we would not have noted the substantial but incomplete benefit afforded by current approved and pipeline therapies for multiple sclerosis. Finally, my colleague pathology have a very difficult time connecting the vascular findings with what is known about the pathology of most patients with multiple sclerosis.



Nevertheless, we are following rapidly evolving information here closely. I will be traveling to Buffalo in the spring as a visiting professor invited by Dr. Zivadinov. I will look carefully at his state and approach at that time. We have also begun discussions with our colleagues in the stroke program here. They, like we, are considered to be among the best internationally dealing with stroke. Thus this is an important area for collaborative investigation that we likely will pursue at ----. Clearly it is important to either substantiate the findings of the investigators in Italy in an independent fashion, or to determine the reality of this observation quickly, least to many patients with multiple sclerosis have needless and expensive intravascular interventional surgery, or alternatively are denied its benefits.



There is one issue that is particularly important for you about the findings of Zamboni and his colleagues. While they note consistent abnormalities on venous Doppler flow studies that seem to stem primarily from the azygus venous system in patients with primary progressive MS with spinal predominant symptoms, on venous angiography, they note a very disturbed venous architecture training the spinal cord in all patients with primary progressive MS. Dr. Zamboni freely acknowledges that there is no possible way to reconstruct this aberrant venous system that seems to be typical of patients with spinal primary progressive MS."



Like most of you, I've looked at clinics in Canada and flights to Poland, but what am I gonna do when I get there? I believe we'll have a much clearer roadmap after the Buffalo studies. Thanks to those of you here who really set the wheels in motion! Cheer, you're awesome!

Vigilant Patience, My Friends!

Happy Holidays!

(Hopefully we'll see the oral meds soon! Needles Suck!)

Of course, your dissections are welcome too!

What does it mean to say spinal MS? I had lesions on my spine, but I don't think it effects me in any way. I did a self-evaluation and I think I am 6.5 EDSS. Does this mean I'm screwed...again?

I'm gonna say "spinal MS" would mean that the majority of lesion activity is in the spine with little activity in the brain.

Maybe leaining towards Transverse Myelitis or even Devic's.