So I am sitting here being all sharp as a tack, waiting for the legs to respond, blah, blah, blah. What to do with my time?
Connect with as many other GU liberators as possible! I'm no stalker, I assure you. Several have found me through TIMS, FB, and this blog. I now have made at least some contact with 6 liberators plus myself. When there are only going to be 20 of us total, that's 35%! Two of us have already been treated. Two more are set to go this week, and I know one man who is scheduled for next week. I am having so much fun meeting new people who will share with me something very unique. FOR NOW. I hope that very soon we will be just the first of many.
I think that we are a very unusual group. We are the only patients that I am aware of in this country who all live in the same area, and are being treated and followed by the same doctors in an official study. Have I mentioned lately how proud I am of Georgetown? My docs rock!
The closest thing that I can find to our experience is the 6 people who were treated by Dr. Sandy McDonald in Canada. Here is a story on CTV about his patients' experiences.
I know that the Stanford pioneers came from all over the country to be treated. They are my role models for trying to connect as many GU patients as want to be connected. Many of the Stanford patients have done a remarkable job of staying in touch with one another, and generously sharing their experiences with the rest of us on the thisisms.com (TIMS) forum.
So I'm not sure what I am going to do with my new connections now that I have them. Certainly nothing without their permission! I hope that eventually we can be a powerful force for the CCSVI cause. As in: Check us out! We were treated according to Zamboni's protocol, and (while this may be a little premature) look what we can do NOW!
Stay tuned on this one. I'm just getting started!
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2 comments:
Hi Lucky Lady,
My friend Helen tells me that she will be patient #3. I'm excited for her and hope that hear good news soon.
I'm not a patient at GU but it is good to know that this research is being done here at home. I see Dr. Simsarian in Fairfax and am doing Rituxan.
I've been quiet on my blog about CCSVI, but I am certainly curious and would like to hear more patient first-hand accounts.
Hope you continue to do well.
Lisa
Hi Lucky Lady:
I am MS patient from Taiwan at East Asia. I am also excited about Dr. Zamboni's result. Yes, indeed, it's a hope of all MSers. Here in Taiwan, MS patients are few. MS is treated as a rare disease. Very few doctors know this disease. With the internet, I can access all newest information. Due to far distance from North America, I didn't participate in the 500 test in Bufferlo. I am still work hard to gain any possibilities for medical help here, also for other MSers in Taiwan. To convince doctor to do MRV and the Liberation treatment is not easy. But I believe I will be cured by this.
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