drsclafani wrote:unfortunately, there is no alternative to angioplasty and or angioplasty with stenting for CCSVI. Thus the control in this circumstance is NO TREATMENT. One cannot compare Liberation to drug therapy. Afterall, we have been quite vocal about the fact that we are not treating MS.
Can't you compare venoplasty PLUS drug treatment to just drug treatment? We could have both groups be on an accepted treatment, right? So the treated group would also be on one of the accepted therapies as well as undergo venoplasty.
we could study this. but First safety. no one has corroberated zamboni yet. We hear lots of anecdotes about recurrents after encouraging early outcomes. We need to clarify this before we can compare drug therapies.
why argue with it. by proving safety we clarify techniques safety and complications and patients get treated.
we are not ready for randomization.
lets get several 200-300 patient studies completed and we will have learned a lot. that will allow many patients to be treated while proving safety and efficacy.
then we can move toward stent versus no stent, venoplasty plus ms therapy vs venoplasty without drug therapy, etc. you get my idea. in the mean time we can treat a couple of thousand patients while we assure to the medical community that no one has been treated dangerously
1eye wrote: i was just thinking if you allowed swapping controls those people wouldn't have to wait the whole 2 years.
euphoniaa wrote:After one lab did EMGs over and over at different temps on my arms & legs, I was sent to another lab for evoked potentials. They got such abnormal readings on my left leg that they did the SSEPs over and over, with 4 types of electrodes and then the "cattle prod" as they jokingly called it. Ha. It took 2 techs to hold down my leg during their final assault on it, because of the nerve spasms.
drsclafani wrote:in the mean time we can treat a couple of thousand patients while we assure to the medical community that no one has been treated dangerously
After living through 35+ years of MS crap, I truly am a patient patient. I'm excited to be on your list, to be part of the "age of discovery," and to have the opportunity to contribute, no matter how long into the faraway future. I only hope it's my turn before I hit your upper age limit. Very Happy
I have a few rambling comments about those “confounding research variables" you mentioned and about the limitations of the current MS tests. I’m sure you’ve noticed that many (most? all?) of us have more than one serious, symptom-producing medical condition to contend with besides MS. I've always suspected that the uniqueness of every MS patient was due more to our different combinations of medical woes than from MS alone. Now I suspect an additional element – our individual vascular problems contribute and are just as varied.
**Which symptoms relate so directly to CCSVI that they can be tracked before/after treatment
**Which symptoms are due instead to the eventual MS results of vascular issues (like lesions in specific CNS areas) that will take longer to heal
**Which symptoms are due entirely to our other medical conditions and do NOT relate to CCSVI/MS (like many of mine)
**Which symptoms are due to side effects of the meds/supplements taken - or "medicine soup" as one of my docs called it
**The placebo "effect" (not to be confused with placebo treatment). No matter how much we’d like to think we’d be less affected by it, the placebo effect is so universal and well-documented throughout the medical world, why would it spare only MS patients? And I've become intrigued by the "Nocebo Effect" as well, suspecting both of them have influenced my own experience with MS. Here's my thread on that: http://www.thisisms.com/ftopict-8567-.html
MS surveys/assessments: I've been reading tons of suggestions here about how to evaluate us with all the usual old MS surveys & tests, but it seems to me that CCSVI research will have to develop its own unique scales from the new perspective - specific enough to identify previously unrecognized symptoms, but broad enough to encompass all the usual MS suspects. The "old school" versions have never been very helpful before, so why should they suddenly be more accurate now?
However, I'm currently in the midst of an IRB approved MS fatigue study at my place of employment, and, unlike my own charts, the commonly used scales they give me for the studies are of limited value even for evaluating MS, let alone CCSVI. They seem outdated, inadequate, non-specific, and sometimes silly.
For example, I have dozens of measurable MS issues, but fatigue is NOT a problem with me.
Electrophysiological Data (Oh nooooooo...):
I'd be glad to do any tests that would add to the CCSVI database, but I'd rather avoid these. The one symptom that has remained constant since my dx - and the one that seems most "MS-y" at first glance - is probably not from MS at all, and is more likely a PNS issue: popcorn twitches under the skin in my entire left leg & foot, 24/7. They first appeared after hours of needles and electric shocks (EMGs and SSEPs) that, I suspect, may have fried my fragile, demyelinating, peripheral nerves, damaging them permanently.
**My lesions didn't change or enhance between my 3 sets of MRIs.
**I do NOT have excessive fatigue.
**I do NOT have an exceptionally low tolerance for heat.
**I do NOT have exacerbations.
Yes, L, I have always been wondering about that. If in childhood of identical twins similarities in CCSVI (as regards type of vein problematic/location) would be found, this would confirm the congenital issue.L wrote:There have recently been twin studies published (one with and one without MS) that concluded that there were no major genetic differences between the two. I'd love to see twin studies regarding CCSVI.
Zeureka wrote:And if one identical twin then develops MS, the other not (and there are such cases) wouldn't this confirm that MS is still multifactorial, as additional environmental or other factors must have played an additional role on top of CCSVI to then develop MS.
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