Thanks for all the expressions of concern and the many kind words. They're very much appreciated.
I'd like to respond to each of your questions individually, but frankly, that would be a bit too exhausting. So, I'll try to cover all of your questions in this one post.
In order to be given a diagnosis of "clinically definite multiple sclerosis", a patient must fit into a very specific set of diagnostic criteria (the updated McDonald criteria). These criteria can be found here:
Given my imaging and diagnostic test results, I definitely do not fit the criteria for Primary Progressive Multiple Sclerosis. These criteria were originally designed to facilitate the inclusion/exclusion of patients into clinical trials, but are also used to identify patients whose cases warrant and require further investigation. I'm definitely one of those patients.
It's long been known that vascular issues can cause neurodegeneration. Decades before CCSVI was even a notion, neurologic vasculitis was a known and documented disease that could often be mistaken for MS. Vasculitis can cause lesions that appear identical to MS lesions on MRIs, and its victims can suffer from relapsing remitting or progressive courses of disease. The immune response seen in MS patients is absent in vasculitis, and vasculitis responds to a variety of therapies. In any discussion of the differential diagnosis of MS, vasculitis is always prominently represented. Keep in mind, vasculitis is not CCSVI, but a recognized and separate disease well known to medical science. A great paper on the differential diagnosis of MS can be found here:
http://www.neurology.wisc.edu/publicati ... euro_2.pdf
Another vascular abnormality that can be mistaken for MS are arterial fistulas, which usually create problems in the spine.
I'm in total agreement with those of you who have said that MS is very likely not one condition. I believe that MS is a syndrome, a collection of different diseases that share common symptoms and physical manifestations. Having said that, there are dozens of diseases that can be misdiagnosed as MS. This is one of the main reasons that Dr. Zamboni's research has been met by skepticism at the National Institutes of Health.
The initial reason I was seen by the NIH was to participate in a "Natural History of MS" study, being conducted specifically because the NIH was finding that patients misdiagnosed with MS were skewing the results of many of their MS research studies. The purpose of the Natural History study is to identify a pool of patients that the NIH is confident has MS, for use in future studies. Dr. Zamboni's claim that 100% of the MS patients he imaged exhibited stenosis throws a huge red flags for MS researchers, simply because in any sizable group of MS patients there will be a significant number who have been misdiagnosed. Due to this population of misdiagnosed patients, it would be virtually impossible to find 100% of any trait across a sizable portion of MS patients. It is the very heterogeneous nature of the disease, and the fact that an MS diagnosis must be made clinically, that makes such a claim highly improbable, if not impossible.
Hopefully, studies already underway, and those in the near future, will help to clear up this picture. Perhaps CCSVI will one day be considered its own disease, separate and apart from Multiple Sclerosis.
Because of the anatomical position of my own area of stenosis, which is between two bony structures, it is unlikely that balloon angioplasty would have any lasting effect. This location also makes stenting the area difficult or impossible, and increases the danger involved in any such effort. I've been told this independently by two different highly regarded radiologists, despite Dr. Dake's advising me to stent the stenosis (along with a stenosis in the right jugular that no other radiologist has identified). This is not to cast aspersions on Dr. Dake, whose help has been immeasurable in furthering the cause of CCSVI, but it has raised some questions in my mind. As said in my initial post, if the NIH ultimately decides that the stenosis is not related to my neurodegeneration, I will have some very difficult decisions to make.
I have forwarded Dr. Haacke's suggested MRI protocols to the NIH, in the hopes that they will consider them for any further imaging they decide to do. Of course, the NIH is likely to come up with their own standards, but I've found them to be quite responsive to well researched suggestions. I had an MRI of my neck done last week, to look for soft tissue abnormalities that might be contributing to my vascular issues. I'll be very surprised if this MRI shows anything out of the ordinary, and I'm expecting that the NIH will follow it up with a battery of further imaging studies.
I have been promised that the NIH will not "drop me" until they're satisfied that they've explored every avenue of investigation, but they cannot guarantee that they'll ever come up with a suitable diagnosis. Whatever I'm suffering from maybe too atypical to properly classify, or it could be a condition that's unique to my physiology and life history. My hope is that they will determine that the stenosis is relevant, and will develop a strategy to address it.
There is no better medical facility in the world to be poked and prodded by, and I've been nothing but impressed by all aspects of the facility and personnel in Bethesda, from top to bottom. I consider myself very lucky to be in their hands, and in the hands of my primary treating neurologist here in New York, who is a well-known and respected researcher in his own right.
It would be nice to finally get some answers, though...