Thanks to a few friends and family, I have been reminded that my last blog entry was almost a year ago. So, I haven’t died, I haven’t miraculously healed, but I can report I’m somewhere in between and it feels more like the latter. I think my main tendency in writing this is to only report when real changes take place, good or bad.
All throughout the time I’ve had this disease, I could never really understand what was happening to me –or really why. That’s nothing new to anyone with MS – the “could be, may be, might be” disease. Drs. and I knew the Myelin was degrading, but there is no consensus of understanding of why. I didn’t know if the disease was rooted in auto-immunity (current prevailing opinion) or was punishment for throwing rocks at squirrels as a kid. But one thing I did know was that I was dehydrated. I was always constipated, my throat always felt dry, and I drank a lot of water for really no reason as it just flowed right through me. Lots of water in, lots of water out, still feeling dry. Looking back, I wish I had some type of cellular hydrometer to measure and quantify my level of hydration, because I think it’s a crucial part of solving this puzzle.
In conjunction with these thoughts of hydration, I’ve been curious about WHY the CCSVI process worked. What was going on inside the head? The body? The cells? Is it the iron molecules as Dr. Zamboni suggested in his studies, or did the body have a temporary (perhaps permanent) avenue to reinvigorate and introduce blood – or more blood - into our microveins? I don’t think anybody really knows yet. Many have offered up ideas and people really love to get the human body all tied up in knots complicating things to the millionth degree. There are 40-60 known clinics around the country doing CCSVI procedures, and probably hundreds of vein care doctors who do it without advertising, all with varying degrees of success – and opinion. The MS Society and many doctors think it doesn’t work with any degree of regularity, and say results, if any, are short-lived. Even my success is seen as a failure in the medical community because I ended up re-clotting to the point where I lost my ability to be a surgical candidate on the left jugular any further.
Everyone agrees MS is a disease caused by lesion growth in the brain, but nobody seems to agree what the root cause is. Many theories have emerged over the years, and blood flow, as one theory, has come and gone. Prevailing thought on all the mainstream websites is that the disease is an auto-immune deficiency resulting from the body attacking itself. Many of us who have this disease don’t believe that for a number of reasons, not the least of which is the failure to explain why no lesions in MS patients are below the shoulders. The disease has been relegated to the back rooms of most neurology clinics and doctors’ offices because it’s the ugly stepchild disease that can’t be fixed or really treated properly. Doctors throw medicines and drugs at it that have no more proof of efficacy than CCSVI. In short, MS is a great big bowl of bad spaghetti and nobody knows why. The extra bonus is they tell us we’re getting closer to finding the solution every day, but there doesn’t seem to be any proof of that either.
So back to hydration. My theory for some time now has been that MS isn’t an autoimmune disease, and that CCSVI works (even if temporarily) because of blood perfusion. The missing link, I am thinking, is hydration. Not the feeling thirsty kind (although that would certainly kick in), but being hydrated at the cellular level. The kind of hydration where your skin feels less dry and more pliable. The kind of hydration where constipation is part of your past, where you hold a much higher volume of urine before having to empty, the kind where water consumption does something inside instead of flowing right through, and when you forget to drink water in the afternoon one day you don’t end up with a massive headache.
Well, that’s exactly what’s happened for me. After a few sessions of seeing a healing therapist, a woman about my age who has had an amazing gift for healing her whole life, I have become more hydrated, and I have several improvements in my condition to prove it.
1) I have never lost the ability to squat down like a catcher in a baseball game and stand back up, but I did lose the ability to do it without holding on to something. I can now. My legs have become stable enough to do that a few times in a row. I still have trouble walking any distance over a couple hundred feet, but I can usually go down stairs without holding on to anything. Up is still tough.
2) Wet sneezes. Ask anyone around our office. I sneeze 20-30 times a day, and they are always 2-3 times per event and always dry. I could sneeze at a dinner party right in someone’s face and they’d think the open window was letting in a breeze. Until now. Sneezing is down considerably, and much more productive. Every time I sneeze now we have to get out the squeegees and wipe the windows down.
3) My urinary volume has almost doubled. I still don’t pump it out, it’s still urgent, etc., but it’s less frequent because the size of the bladder trigger has increased, substantially increasing the time between bathroom visits. I now generally wake up once a night to urinate, occasionally two. Imagine how that feels for sleep and waking up in the morning. If you’ll recall, at my worst, I was going to the bathroom every 20-45 minutes, waking up exhausted every morning.
4) Morning headaches gone. Yes, gone. Everyone who works with me at our office knows I’ve spent the better part of an hour or two every morning for the past few years trying to get rid of a hangover-like feeling. CCSVI initially did this too, by the way.
5) Bowels as close to normal as I can imagine. No constipation, no need to help things along like enemas or Magnesium. I just go to the bathroom regularly now. I haven’t had an accident in a long time because I use my mornings to make sure I’ve emptied before going to appointments and I’m still so used to doing that I’ll probably never stop.
It’s a bit of a bummer writing about 5 improvements in my system, 3 of which involve disgusting bodily fluids. So, I’m sorry. Deal with it……I have to. But If these aren’t indicators of a higher level of hydration, I don’t know what would be. Anecdotal? I suppose, since this isn’t a controlled study. But these are measurable improvements that I, and others, can see.
So, now the question is, have I crossed the line into a healing environment? Is CCSVI a temporary alleviation of symptoms that allows a greater understanding of what’s happening? Is the real issue circulation? Is blood accessing the microscopic arteries and veins that supply the areas where we lucky MS people get lesions?
What this fees like to me is hydration is leading to an environment in which healing, ie, myelin regeneration, can take place. We won’t know for a while because even in the perfect environment nerve cells are the slowest to grow. So stay tuned. I’m hoping to report some leg improvements in the near future. I’ll just to keep it under a year this time.