This Is MS Multiple Sclerosis Community: Knowledge & Support

My son has Secondary progressive MS with severe tremors and mystatin of the eyes. We have been reading about (CCSVI) Chronic Cerebrospinal Venous Insufficiency.
Does anyone know of a neurologist in the Seattle area who is open to the idea of looking into this treatment?

I would strongly suggest looking for an Interventional Radiologist instead of a neurologist. The reason being an IR can actually do the corrective procedure (venoplasty or stent placement), and a neurologist isn't qualified to do so. A neurologist can only determine if you have MS.

That's what I did.

You need to get either a color echo Doppler ultrasound, or a MRV done per CCSVI protocols, and then find a radiologist qualified to "read" the images and data to determine if there are any venous problems.

The ultimate test is the venogram; live X-ray images capable of clearly showing exactly what's going on in the veins.

Start by googling for an Interventional Radiologist in your area, and contact them to see if they would be willing to consider CCSVI treatment. The word is spreading fast among the IR's.

Donnchadh

Nice link. Here's dozens of IR's to choose them. I live in Illinois so I have absolutely no connection with them.

Time to be proactive folks. It's either that or live with MS for another twenty years while sufficient studies are done to convince established Dr's.


Donnchadh

I just called quite a few people on the Seattle list and they all had no idea what I was talking about or knew of where to get help. Unfortunately, what this tells me is that all my hours spent on making packets and mailing them to these gentlemen was for naught. Such a waste of time and energy. Seattle has shown to be a follower and not a leader.

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Diagnosed 1994, Self EDSS is 6.5

It's discouraging I know but keep trying. Just by your asking, I am sure someone had their curiosity triggered!

If there's no one close, widen your search.

Good Luck!

Donnchadh

Hi DonnC, Sandy,

I've put together some fancy binders but have yet to send them out. I think I will send out a well-written letter to all of my (6) local IRs with an offer to send more info. It only takes one (1) person to get the ball rolling! We have momentum currently and we should try to leverage it.

Best, PN

Ishashan, SandyK et al.

See also tread
http://www.thisisms.com/ftopic-9775-day ... asc-0.html

for inspiration

If you are in WA State, please join (CCSVI Washington), so we can team up!

I will be speaking at my MS support group this May, Edmonds WA, date and address to follow. Any and all are welcome, let's put our heads together!

Lavonna has taken up Joan's call to "Go Local" and assisted all of us by establishing a FB group for each state. Go to (CCSVI Worldwide Victory) to find the FB group for your State.

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RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com