I always felt that I am lucky that my neuro and GP are more open-minded than the average medical professional... and my meeting with my neuro today reinforced that feeling. Some of the things that I learned (or sometimes only felt was implied - I don't want to put her at odds with colleagues who are MS "experts"):
1. I am one of four "liberati" she has as patients.
2. In her assessment of my condition, she notices that I have had some improvements in my symptoms. This is the first time that this has happened since I was diagnosed in 2004.
3. She agrees that, given the results of the long-term studies regarding CRAB drugs and my slightly elevated liver enzymes, I should stop taking Betaseron.
4. When she goes to Europe in October for a conference, she intends to get information from her colleagues regarding CCSVI, liberation (and also their experiences with LDN).
5. When she goes to Europe, she intends to set up a meeting with one of the Polish centres that are doing the liberation procedure.
6. With regard to things like LDN and CCSVI, it's not surprising that big research money is slow to come, because those aren't treatments that will produce profits for the biggest funders of medical research in North America, the drug companies.
7. Many neurologists are not against giving the CCSVI theory a good and fair investigation, but it is hard for an "ordinary" neuro to go up against (or even question) their colleagues who are the big-name MS neuros in Canada.
8. In New Brunswick, at least, open-minded neuros are quietly discussing the possibility of doing more regarding CCSVI (especially follow-up on "liberati") with interventional radiology and vascular specialists, but these others don't see that we have the technology or human resources in the province (except perhaps in Saint John) to do a credible job of that.
A really good meeting, and one that should give hope to others who have found their neuros less receptive, or at least openly so.
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