Comments on Wheelchair Kamikaze: Video: CCSVI and The Liberation Treatment- A Whole...

Hi Kelly-insurance did pay for my testing and subs...

2011-01-03T18:48:44.576-05:00

Hi Kelly-insurance did pay for my testing and subsequent attempted CCSVI treatment. Not sure what's going to happen the second time around. Also, if you want to ask me a question directly, the best way is to e-mail me at WheelchairKamikaze@gmail.com, especially when commenting on older posts such as this one.

Hi. My name is Kelly. Did your insurance pay for a...

2010-12-24T06:08:10.937-05:00

Hi. My name is Kelly. Did your insurance pay for any of the testing you had related to possible ccsvi?

This method used by the Dr. Paolo Zamboni is reall...

2010-11-15T13:00:28.296-05:00

This method used by the Dr. Paolo Zamboni is really astounding, because by this way he has achieved to rescue a lot of people around the world who were close to die.
I hope another doctors start to use this method in a close future.

Just to respond about the red face question. Yes m...

2010-09-24T14:44:18.251-04:00

Just to respond about the red face question. Yes my entire turn red when any excersion is done and Yes I have CCSVI also No this did not always happen to me I was very active as a child and into my 20 up to 30ish but when I was about 32 my face and neck would become so red people would ask me about it. My doc says it is nothing but I often thought the same thing you are thinking maybe it is a sign. Thanks for asking.

Marc: IDM , IDM , IDM , with me had the sme proced...

2010-04-28T12:34:18.611-04:00

Marc: IDM , IDM , IDM , with me had the sme procedure, use a pill to make the blood thinner PLAVIX and a pill of Ecotrin. So far so good. I'm not worrying much. Yesterday had my app. with the Neurologist nothing new a total waste of time.
He told me that shortly MEDICAL marijuana will be legalized for the spasticity (I have to take at least 6 pills sometimes more Baclofen. So will see.
Have a tranquil rest and enjoy the simple pleasures of life, you and I are very lucky have wonderful wives. Hugs
Sefardisafran
Hoboken NJ

I have had ms for 25 years and I too am interested...

2010-02-12T16:55:32.135-05:00

I have had ms for 25 years and I too am interested in finding a hospital or doctor that will do this test. Please let me know. bdoddridge@yahoo.com

My wife has MS.We had a requesition from her neuro...

2010-01-22T22:03:40.118-05:00

My wife has MS.We had a requesition from her neurologist to do MRI at Sunnybrook and they refused because there is a study underway.We will have to go to the states to get what is required.We can,t wait for this disease to progress any further.If anyone knows of a hospital or doctor that will perform this test , please let us know. billman4843@yahoo.ca

Ms for 10 years, forget the ms society, email me w...

2010-01-10T13:16:31.804-05:00

Ms for 10 years, forget the ms society, email me we are organizing. If your doctor doesn't want to help or look into it, get rid of him. we have a paln to hire our own doctor's and train them.

oyleve@yahoo.com

Hi, I love your blog. I, too have ms and will be...

2009-11-29T16:13:50.059-05:00

Hi, I love your blog. I, too have ms and will be speaking with my doctor on Monday to see if I can get CCSVI treatment here in Florida (I live in West Palm Beach). I'm not surprised that the MS Society is not being supportive. I've been in a wheelchair for 20 years, just had my fifth book published (go to YouTube "The Self-Empowered Woman"), but (like Dr. Zamboni) was ignored.

Keep up the good work!

Kamikaze, I agree that we should be careful with ...

2009-11-26T11:28:24.348-05:00

Kamikaze,

I agree that we should be careful with the 'do it yourself' diagnosis method BUT.. how many of us have tried to share our symptomatic experiences with our doctors only to have them fall on deaf ears as they did not fall into the auto-immune/ CNS profile? We can not sit back and wait..letters, e-mails, phone calls... even if this only helps 1% of us.. that is 25,000 people!!!

With regards to the 'red face' theory... ...

2009-11-26T11:06:12.723-05:00

With regards to the 'red face' theory... I too, since my teens, have had this reaction to aerobic exercise. I was an accomplished basketball player and it was so pronounced that my coaches worried. I am 51 now and was diagnosed 18 months ago. Just sayin'.....

I read your blog often. Thank you. I've just...

2009-11-23T15:39:15.376-05:00

I read your blog often. Thank you.

I've just written one of my own about all this. I am freaked out and mildly resentful. A little hope is a terrible thing.

Anonymous #1-I don't think there are any "...

2009-11-22T15:03:18.824-05:00

Anonymous #1-I don't think there are any "do-it-yourself" test for CCSVI. Everybody's physiology is so different that there could be literally hundreds of reasons for why your wife's face gets flushed when she exercises. The only way to determine that stenosis is present is through imaging studies, either CT venography, MRV, or Doppler scans. Even with these sophisticated technologies, it takes a trained technician and a top-notch radiologist to determine whether stenosis is truly present.

Anonymous #2-I did have a CT venogram that found that my left internal jugular is stenotic. The NIH is currently trying to determine whether or not this is relevant to my condition. They had me do an MRI of my neck to determine whether or not these soft tissue abnormalities might be contributing to the stenosis. I think they're going to order more imaging tests, to determine exactly what's going on in my vascular system. I'm hoping to hear from them this week, will keep everybody updated...

Marc, didn't you talk to the NIH about CCSVI a...

2009-11-22T11:20:25.242-05:00

Marc, didn't you talk to the NIH about CCSVI and get your jugular veins scanned?

What became of that?

Hi Marc, I just wanted to respond to the questio...

2009-11-22T07:55:08.811-05:00

Hi Marc,

I just wanted to respond to the question above about the DYI CCSVI test. I have always gotten very flushed in my face during exercise (beet red). I always assumed that it had to do with the fact that I am very fair skinned. Not sure about the science here, but who knows. In any case, I would like to get tested for CCSVI.

Thanks for a very informative and useful post! I will try to spread the word to the ms community here in Norway.

All the best, Ann

Do It Youself CCSVi test: My wife had 1 MS like e...

2009-11-22T02:20:58.884-05:00

Do It Youself CCSVi test:

My wife had 1 MS like episode, and so by definition doesn't have MS, so far, but is being treated for this "just in case"

I am intersted in quickly determining if this CCSVI thing is real or not. i don;t want to wait two years for academics to finish a study. I don't want to fool myself either though.

When I exercise I get flushed evenly all over, but when she runs, her head turns beat red. This seams to be consistent with this whole CCSVI theory. I am interrested in knowing if this might be an easy do it youself sign that CCSVI is occuring in someone.

So my question to you and any of your MS readers is:
During exercise does your head turn significantly more flushed (redder) than your body?

I think that the neurologist from McMaster univers...

2009-11-22T00:29:50.991-05:00

I think that the neurologist from McMaster university said it best... That if this is procedure that helps only 10% or 20% of patients in the long run, it's still pretty damn exciting.