Chrystal wrote:Brightspot, regarding the MSS and CCSVI - from what I've seen/not seen, heard/not heard, read/not read - I agree with you. They have held education sessions and printed booklets on how to live better with various MS symptoms which were helpful and appreciated...but here is a procedure that is helping lessen those very symptoms so we can live better!!!! Why wouldn't they want that for us now?
Do all the further studies alongside the treatments for those who have blocked veins. Allow and RECOMMEND the testing at the very least, and for those who have blocked veins and want the balloon angioplasty (which the doctor on W5 said was not dangerous!!) - allow and RECOMMEND that they have it. There are so many of us experiencing horrible headaches on a daily basis, overwhelming fatigue and other symptoms that could be the effect of the blocked veins. Why let us suffer these symptoms if we can have some relief and be more productive and useful in society?
The difference CCSVI has made in the quality of life for those who have already been liberated!! Even a small improvement is huge when we're talking about living with MS. No one knows what this illness is like unless they have lived it for themselves. I have tried to always focus on the positive, see the half-empty glass as half-full, look for the silver lining in the MS cloud, laugh about it, etc., etc....but it gets harder and harder every day.
I have slept most of the last nearly 16 years of my life away, thanks to overwhelming fatigue. Fatigue that affects my movements, coordination, thinking, speech, memory, concentration, hand-coordination, etc., etc. E-v-e-r-y-t-h-i-n-g basically starts shutting down as I grow more fatigued.
Because I don't always have "visible" symptoms, I hear, "You look fine!" And that's what people think about those of us with symptoms they don't get to see for themselves (cognitive, bladder (thank goodness they don't see), bowel (ditto on the bladder side comment), vision, pain, etc., etc.). MS destroys lives, bit by bit. And for the neuro on the latest W5 show to say in the extended interview clip..."For them to impose on us..." in reference to our pushing for CCSVI testing and treatment now, asap...????
First of all, about the research studies and clinical trials they say is necessary in keeping with the established process for science - why didn't they launch these years ago instead of just talking in their own MS circles about CCSVI, as their fellow neuro let slip in an interview. I can just imagine the talk that went on in those MS circles, "How do we bury this fast?" "Quick, someone look up how Schelling was stopped 30 years ago and we'll do the same!"
For someone to dismiss CCSVI and the Liberation Treatment as a hoax, grumble about the money being wasted on this research...and then submit his own application for a research grant to study it....!?!?!
Anyway, we know more and more clearly every day who is fighting with us and who is fighting against us on CCSVI.
Brightspot, thank you so very much for all the amazing work you have been doing to help CCSVI move forward here in Canada!!!!! You are wonderful!!!! Thank God we have you!!!!
Take care and God Bless,
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