craziness

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

craziness

Postby Rokkit » Tue May 26, 2009 2:18 pm

Marie's PCP read Zamboni and said "OMG this is IT," that gives me freakin goose bumps.

My situation: 45 yrs old, minor right-sided weakness and bladder issues, probably have to start IC in a few months. Symptoms started 2 yrs ago. MRI is clear, except for narrow syringomyelia T7-T9. Spinal tap says MS. Haven't been to a specialist so I haven't been diagnosed but I think it's very likely to be PPMS. I don't have issues with heat as much, but cold weather or stress cause my legs, mainly right to stiffen up bad.

I didn't care to get diagnosed because it's apparently not treatable anyway so why bother. Now there may be a reason to bother. My PCP seems to be open minded and my neuro does also. Since I don't have an MS specialist yet, but neuro thinks I should see one, I was thinking I should wait and see if one surfaces in the U.S. that is open to Zamboni. Based on what I've read here that may be a pipe dream for a while.

If anyone hears of a good MS specialist in NYC (or anywhere U.S. really) who is interested in the work of Zamboni, Dake, et al. please let me know. I would rather get diagnosed by that guy if it turns out I have MS. As much as I'd like to run off to Stanford ASAP, that seems crazy without an official diagnosis first. Problem is, based on my level of symptoms and lack of MRI evidence, I could see it being years before MS would be diagnosed. If Zamboni has found "it" or a big part of it, I'm not going to sit around and wait for the macdonald criteria or whatever to tell me it's okay to get a stent in my veins. I'd like my bladder back now.

TIMS advice greatly appreciated.

Thanks.
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Postby peekaboo » Tue May 26, 2009 3:25 pm

Rokkit - Welcome to TIMS. Unfortunately getting a diagnosis has been a nemisis for many here.

I think the first thing you should do if you are sincerely interested in the CCSVI therapy would be to get an MRV or CT for diagnosis. I don't know where you are on this lovely planet but Dr. Dake has talked w/others who can't get to him that he would look at your test and consult you. I believe CureorBust is doing this in Australia.....

I undersatnd that the radiologist preforming the test must know what to look for so be conscious of this fact while finding the testing resource.

Wish the Best.
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Postby mrhodes40 » Tue May 26, 2009 3:32 pm

Hi Jacobs neurological is following the 4 US people in the Liberation trial. Apparently they are not doing a new trial here or taking more in that one, but i'd assume them to be early adopters of the new paradigm.

Maybe if you call there you could find a neuro who is interested or involved in it directly..... that person must be at least open to it even if not reating on that paradigm yet.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby whyRwehere » Tue May 26, 2009 10:29 pm

I would have thought NOT having a diagnosis, would make it more likely for a specialist like Dake to see you. Do you have headaches at all? Perhaps you are still checking every avenue of possible illness before you get diagnosed with "MS".
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Postby Rokkit » Wed May 27, 2009 2:44 pm

No headaches. My neuro tested me for everything reasonable. The symptoms and spinal tap indicate MS. He said it's either MS or we just watch and see what happens, there are no other leads. I'm not really a watch and see what happens kind of guy, so either way I will probably pursue the CCSVI angle. I hate to rush into it since it may turn out to be yet another dissapointment for MS, but I'm also greedy and would like to prevent permanent damage if possible. I'd like to pee like normal people if I can.
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