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. 

3/30/11 The Doctor Parade

Spring Training........a much better thing
to do this time of year

Since I was having so many challenges after coming home from the hospital in February, I decided I should go see a local doctor to check on a few things.  The challenges include still not properly absorbing water which makes me feel dehydrated, my eyes dried out, and constipated all the time.  These, of course, on top of the inability to walk properly, having the bathroom problems, and my new great thrill in life, a heart that goes in an out of rhythm whenever it feels like it.  Sure, sitting here writing about it and anyone reading it seems to minimize the situation, but living with this crap, every minute of every day, is a joke.

And so a trip to the family doctor.  Discuss, review, assess, and draw blood.  Lab results a week later and another visit, then a referral to a caner clinic.  Nobody tells you the cancer clinic is also the hemotologist, which I was referred to because my platelets suddenly decided to go low.  After leaning out my shorts, I met with her yesterday.  This was a treat.  I tell her about my CCSVI experience and the idea that MS may be related to the incomplete return of blood way from the brain, and she listens with some interest.  I tell her about my A-fib and she listens.  I tell her I have no idea why I am visiting her, and that I figure there's a 99% chance that she'll have blood drawn but have no idea why my platelets are low.  I ask if it could be related to injuries while on Coumadin.  Nope.

Any chance it's the Coumadin/Heparin combination as my doctor friend suggested?  No.  Any chance it's from residual medications from the hospital?  No.  Any chance it's related to all the nonsense I'm going through?  No.  Just no.  No idea.  As usual, no idea.  15 years of medical training and she scorns the CCSVI as a possible link to MS, but she has no idea why my platelets are low.  The story of my medical life.  They have names for everything, but no cause and no cure, and the scorn for anything new is rampant.  There's certainly a billing code for the visit, but nothing for me.  Funny how as a contractor when I don't have the solution or have complications the customer demands a discount or refuses to pay altogether, then wants to sue me and report me to the the contractor's board, and takes out a full page ad in the newspaper and every local TV about what an awful person I am.

Then there's Dr. Arata.  I sent him an email last week asking about my Doppler results and what was next.  My left jugular has re-stenosed again, likely clotting, and he got the info last week.  I sent him an email on Wednesday and he hadn't replied by Friday, so I figured he was busy as usual.  Then I got a reply on Sunday morning with an apology for the delay.  Three days is hardly a delay in medicine.  Hundreds of MS patients a week calling his office, and he emails me on a Sunday morning with an apology and a plan.  The nerve..........

Anyway, the plan is to get my INR level of the Coumadin up to therapeutic levels consistently, then go back in and do another Venogram/Angio.  Why does this make sense?  The Lovenox I was on before did nothing, and all the hospital meds weren't isolated.  Now the Coumadin is isolated and measurable.  The clotting is only in the left jugular and is moderate, not fully occluded.  This is progress.

It seems so close yet so far.  I want to feel like I did in October after the surgery round 1.  Like a human, not a case.  I had measurable results, improved symptoms, and hope.  Since then, it's been a steady stream of bad news, but now I see measurable progress again.  Hope.

I wish this could go faster.  The waiting is the toughest part.