This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi - I posted recently that I would like to undergo CCSVI testing. I am having trouble getting it done here in the States. I don't have an MS diagnosis but I have a lot of weird symptoms. Should I just fly out to Poland? What do you all recommend I do? I don't care about money anymore I just want to figure this out. My life is going downhill, fast.

Basically I am in a constant state of dysequilibria - when I walk it feels as though I am walking on a boat/funhouse, when I am sitting or laying down my dizziness subsides but it can hit me just from moving my head. My legs/butt/trunk/feet all burn and my toes feel cold quite often. My neck movements have become jerky when I lie or sit down. I really try to not jerk my neck because it ends up giving me a headache but after my head is still for so long, the next movement I make with my neck (ie turning my head slightly when reading) ends up being rigid and jerky.

One new symptom is that I feel a constant vibration/shaking/tremor in my muscles throughout my body and my legs feel weak when I walk around. I always have to hold onto a rail or lean against something. I tried taking a yoga class on Sunday and 20min into the class my scalp went all tingly/numb and I ended up having to leave and had a hard time walking out.

Any advice?? I basically want CCSVI testing yesterday. Thanks!!

Sorry you're going through so much! Has your doctor ordered an MRI or a lumbar puncture or gone through any of the testing and looking at differential diagnoses for MS?

What state are you in? There's a bunch of docs out there doing CCSVI treatment already. NY, California, Seattle, Florida....

Do you have insurance? It's best to try and do this locally or in your own country, especially if insurance will cover it.

Wishing you the best with this. CCSVI is new and still unproven, but promising.

Hi CeCe! thanks for the reply. I am in the New England area and within driving distance from NY. I just don't know where to go to get the testing done. I don't want an MS diagnosis yet because then I'll have to go out of the country for ccsvi treatment if I have it. I do have insurance. Who in NY can I go see for CCSVI - can you PM me some docs please? I called an interventional radiologist in fl the other day but they wanted me to have all the mrv's done, no primary or neuro is going to order that for me.

i have a clean brain mri as of march 2010 and a clean neck mri as of march 2009. no lumbar puncture yet, they wont do it as i dont have any objective findings.

If you can afford for to pay for the test out of pocket, the doppler testing done in Atlanta is top notch and follows the Zamboni protocol.

One thing I wish I'd done immediately before my MS diagnosis: buy life insurance. Disability insurance might be smart too! I don't qualify for it afterwards....

The Northeast is where's it at when it comes to CCSVI treatment, you are in luck. Dr. Siskin's list stretches into next year, maybe try Dr. Mehta in Albany, NY? Also Dr. Soares has been mentioned here lately, where is he at....

[quote="Cece"]One thing I wish I'd done immediately before my MS diagnosis: buy life insurance. Disability insurance might be smart too! I don't qualify for it afterwards....

The Northeast is where's it at when it comes to CCSVI treatment, you are in luck. Dr. Siskin's list stretches into next year, maybe try Dr. Mehta in Albany, NY? Also Dr. Soares has been mentioned here lately, where is he at....[/quote

I would concur. If you get diagnosed with ms you will be declined for life, disability and critical illness insurance. I was lucky to have all 3 and was lucky ( smart ) I had all this lined up years before my health changed.

Dr Soares is in Rhode Island, I believe his clinic is:

The Rhode Island Vascular Institute

Good Luck

Yes, Dr. Soares is at Rhode Island Vascular Institute. I spoke with him and his clinical services manager last week and found them to be helpful, informative, professional and understanding. I don't know if Dr. Soares would require a confirmed diagnosis of MS, but it's worth checking out, especially because you're in New England.

Not exactly northeast, but Georgetown University Hospital does extracranial doppler for a very reasonable price, $450 I believe. They cannot look at the azygous with doppler, but they found stenosis and reflux in me. Armed with that information then I went looking for somewhere for treatment.

Like StLouis, I can recommend CCSVI Atlanta. They got me in within a couple of weeks and they are Zamboni protocol trained. Cost is $550 and they do not take insurance.

Whoa CaptBoo. You got my attention with that price!! $550 ??? Is that the cost of the examination? What is the cost of the angioplasty?

There is a recent tread about pricing:
http://www.thisisms.com/ftopic-13717-0- ... rasc-.html
good luck!