Since I suspect that some readers of this thread also don't fit the classic pattern, I'll go into more detail that some might want to read.
First, my symptoms are not typical. My left leg usually doesn't work. That's it. Oh, there are a few other small glitches, but nothing worth doing anything about. I was diagnosed in 1989 and when I switched neurologists (because of insurance), from that point on, I never thought I had MS. Every test, MRI, etc., when whatever doctor would go over my results, they always seemed at least slightly puzzled. I always felt that some day, I would be told that I didn't have MS, just because I never seemed to fit some pattern. I didn't know if what I had would be worse, but it just never seemed right that they kept telling me I had MS.
I had my first CCSVI procedure at Georgetown University Hospital in DC thanks to the neurologist who was the head of MS studies. After the procedure, I had him look at the images and the report and asked him if I had MS. He said “No, you have a vascular problem.”.
So let's start with the premise that I DON'T HAVE MS. Of course, by insurance company standards, I have MS and therefore I am uninsurable to most companies. But since such a qualified doctor said I don’t have MS, treatment by doctors opens up a whole range of possibilities. Boy, is that a mixed blessing. If you take MS out of the mix, there are so many things that could be causing my problem. I've tried a variety of doctors with different specialties and each one of them has found -- and fixed -- problems. But I still can't walk.
So here's a quick (hah!) recap of the last three years.
CCSVI: The IRs who do CCSVI treatment found and treated blockages of 70-90 percent in both jugulars, the azygos, the renal and iliac veins. I had three CCSVI procedures, each time with big blockages opened (except for the first procedure when Dr. Doofus couldn't find a jugular and didn't look past the azygos). So IRs say I have CCSVI and I'm pretty much a non-responder. I didn't get worse, but my walking didn't improve. The only major improvement I got after the last CCSVI procedure was that suddenly I was happy again rather than frustrated and angry all the time. That improvement, thankfully, has lasted more than a year. I have no idea whether those veins are open or blocked these days, and it doesn't seem worth the time and money to find out.
Atlas Orthogonal (Chiropractic): Last October I tried the atlas orthogonist chiropractor who said that my atlas was out of alignment by 14 degrees and my C2 vertebra was twisted. After more than 8 months of treatment, things are usually staying where they belong, but again, no change. The one big improvement happened the day I started using the Aqualizer and the tissue method I talked about early in this thread. Again, the change in my walking was very short lived, but obviously, I still could do it! Now, how could I keep that going? That led to the dental experts.
Dental: So off to the neuro dentist (I'm not sure what title he uses for this kind of work) who says that my problem is probably due to the fact that the disks between my jaws are out of place and that impedes the trigeminal nerve which controls gait and balance. The MRI he ordered confirmed this. His solution was to try a removable dental appliance (NCVD) for four months. Then if that didn't work, either surgery to relocate the disks and then braces for a year or two or another four months to undo what the first four months did if I refused surgery. Oh, and maybe $40,000 out of pocket for the dental stuff, so this doesn't include all the tens of thousands of dollars already spent on other doctors.
Cranial Sacral Therapy: The AO chiropractor and the neuro dentist both said I also needed to see someone who does cranial sacral therapy (CST) to complement what they were doing. Sure enough, the CST doctor said everything was out of whack (cranial bones out of alignment, lumbar spine knotted up, etc.). Luckily, everyone agreed that there was no harm in trying CST for a few months before doing anything else. So that's where I am now, still looking for the reason that I have magic remissions of a few minutes at a time when everything works the way it's supposed to. No one knows why those remissions come or go.
All these doctors seem to think that problems like mine (ours?) are probably located between the top of the head and the collar bones. Also, the problem might be structural rather than primarily auto-immune. That means that they probably won’t need us to take expensive drugs that have the occasional fatal side effect. It might still be the wrong road, but I like it better than the one that my first neurologist had me on.
I’m like a well-stocked work workshop. Depending on which carpenter walks in, he might build a formal dining table, a guitar or a kid’s outdoor play set. Unfortunately, all I need is a wooden salad bowl.