4/5/11 Mayo clinic Follow Up and a plan.....

I had my blood drawn again the other day and the platelet level is back up to the 190 range.  I am kind of thinking the 71 reading was an error in the lab or the sample, or some kind of anomaly such as taking CoQ10 for a week or so, which we learned can react adversely with Warfarin.  OK, that's out of the way. 

Now we're on the plan to get consistent INR results and scheduling the next procedure to root out my restricted left internal jugular.  I am hoping we can do this one outpatient and feel some results right away.  So we're working on that.

Next up, my annual visit to the Mayo Clinic was on Monday.  I am having Mayo follow the progress of my disease for a few reasons, not the least of which was they diagnosed it when others couldn’t.  I also like to have this facility document my disease because I am quite convinced that when I overcome it through all we’re doing on CCSVI and nutrition and exercise, etc., there will be no question about the legitimacy of it.

The results of my brain MRI yesterday showed that there were no new lesions and none had enlarged.  Good news indeed.  Seems the diet and exercise and juicing has done something to hold that at bay for a few years.

Last year when I told my neurologist him I was considering CCSVI, he seemed quite opposed to it and told me I should only consider it in conjunction with the MS Society studies.  He didn’t outright say he was opposed, but I gleaned this from his reaction to a then relatively untested procedure.  He’s very educated, very polished and well respected in the MS community, and he wanted to see more evidence.

I think he got a lot of evidence this year, because he told me many of his patients had come to him with CCSVI procedures done.  Surprisingly, this year, he was warm to a few things.  First, he was warm to the idea that I had the CCSVI done and initially had good results.  He encouraged me to go ahead with our plan of raising my INR to therapeutic levels and then rooting it out so we can obtain whatever benefit we’re going to get.

Second, he was pleased that a doctor in the US with an existing vein care practice was now doing the CCSVI treatment.  We all know that the amount of science that is going overseas is astonishing, and he seemed to feel the data Pacific Interventional has collected would be legitimate and useable.  I told him all what I knew of Dr. Arata and their practice, and it seemed he was interested in speaking with them.  He certainly was interested in how things turn out once we get my jugular vein cleared.  

Third, he confirmed that if the environment was corrected by the CCSVI procedure and the blood brain barrier problem was resolved, my nerves and the myelin sheath may possibly regenerate over time and I could potentially reverse the disease and gain my functionality back.  Might take some time, and may not ever come 100%, but he said it was certainly possible.  When he said this, I was astounded.  I have had a thousand discussions with a lot of people about this, and that was the first time a doctor in the MS community suggested that I could potentially regain my prior functionality.  Quite a shift in mindset, I’d say.

So as I continue to struggle with my symptoms, I now run on some more hope that soon I'll be back to where I was in October after CCSVI #1, and if I can get back to that, this 3 or 4 month delay will be just fine.  Hassle now, fine later.