David1949 wrote:"Those with positive results face significant challenges"
Almost makes me glad I didn't have positive results... almost.
Tilt I'm glad you're having such good results.
For example, I have been wanting to get my pilots license. That dream got shelved a decade ago with a number of other dreams that simply wouldn't be physically possible. Progressive forms of MS are recognized by Transport Canada and rule me 'unfit to fly'.
Now I am left with zero symptoms of the disease I have been diagnosed with yet at the same time, the 'medical baggage' still languishes under the heat-lamp of life for all to see.
What does one do now that they no longer have ANY of those symptoms, yet the very procedure that has fixed them is not recognized in Canada?
Tilt asked me these questions less than a month after treatment. I advised him against flying because i do not think one month is sufficient to see how svi will progress, although tilt is on the far end of the curve in terms of response.
We need to be cautious as we gloriously ask these new wonderful questions
mandamurr81 wrote:Do you mind if I ask how long you were limping before? I am just assumed that I must have nerve damage by now because it has been so long. Initially I had an intermittent limp starting almost 6 years ago, but now it has been a pretty steady gait disturbance for about 2 years.
CureOrBust wrote:Have you seen your neuro yet?
Make sure to see him with your improvements. I have had 3 treatments with the last by Dr Sclafani, with no measurable benefits from any of them. So, when I saw my neuro he was very clear to point out that he has had a few patients have a CCSVI treatment with no benefits. The neuros see each other at conferences and in hospitals, and they talk. This is a way to start an undertow from their side. I so wished I had improvements to show (not just for the obvious), but I also have 2 unrelated neuros who are very highly respected in Australia, and one has a worldwide reach.
FILM YOURSELF NOW! An EDSS of 5.5 to 0 will show up on film and is hard to argue as placebo. Even if you do digress a little (and I TRULY hope not!) It can still be explained under CCSVI as requiring a secondary treatment.tiltawhirl wrote:I decided not to see my Neuros immediately(I have my regular Neurologist, and then the guy I see at the MS clinic at St Michaels Hospital).
I felt it best to wait to see if the improvements are going to hold, rather than going back immediately to demonstrate the progress only to have to eat humble pie in front of my Neuros in the future. That would be the absolute worst thing to have happen as it psychologically reinforces the negative image the procedure has in the eyes of most Neurologists.
So, my regularly scheduled 6 month is coming up in late October. I hope that my results hold and then when I strut my shit back at my Neuros, there will be absolutely no doubt that it's long term, and that it couldn't possibly be placebo/mental results. It will be a tough pill to swallow for them, but after spending time helping people exit cults from a psychological perspective, sometimes it doesn't matter what the facts are. Some will argue black is white in the face of white being black. It will be fascinating to see how his mind justifies an EDSS of 5.5 changing to 0. Magic?
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