euphoniaa wrote:Hi Dr. Sclafani, this thread is great! I can't tell you how much I appreciate it. Besides the obvious reasons – the great CCSVI info, keeping us in the CCSVI research loop, treating us like we're capable, thinking adults - it's also reassured those of us who have had less than satisfactory doctor experiences that you guys really are working for our benefit. This is so refreshing! Thank you very much.
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.
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.
I think the biggest research challenges to evaluate treatment results will be to figure out:
**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
And, as you mentioned (and with sincere apologies to 1eye
):
**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?
I've been researching my own self (charting my symptoms daily) for several years, ever since my experiment with LDN, so I know my body's quirks pretty well and I’ve developed my own ways to rate them. I have about 35 columns with room to note unusual incidents or changes, from walking to mood. The most surprising (and reassuring) discovery I made is that the squares are mostly blank - I don’t have many symptoms "all the time" like it seemed, and the symptoms are often dependent on my outside environment. I've learned a lot about my health that way.
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. They generalize and assume too much stereotypical info about us, leaving no room for exceptions, and most end with a total score adding widely varying variables. For example, I have dozens of measurable MS issues, but fatigue is NOT a problem with me. The FSS assumes that it's a huge one, and leaves no room to note otherwise. I got a negative number on the FSS, and I couldn't even muster up a teensy grimace on that old standby that accompanied it, the precisely calibrated Frowny Face Scale.
The generic MS scales (MSQOL, EDSS, MSIS) are just as limiting:
Example:
Last week I was hobbling around my office in pain - both my hip joint (arthritis) and knee (degenerative joint disease) went nuts. This is not an MS thing – it's not even on my MS side – and I've figured out what I did to cause it. In the meantime, I always wake up and go with whichever body parts are working the best that day anyway, so I still climbed the stairs using my MS leg (it was working fine), one step at a time. My co-worker gave me pitying looks like I'd finally been hit with the Big One they’ve all been expecting and suggested I call my neuro right away, even after I explained that I had a literal pain in my butt and NOT in my head.
But...the MSQOL and the EDSS don't differentiate between MS and other health issues and the MSIS is similar. The MSQOL assumes that MS is the single most overriding health/emotional issue in your life and all else pales by comparison, even though the questions never specifically refer to "MS" at all. However, this leg thing would have tanked my total scores on all the scales, due to a temporary, non-MS technicality.
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.
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.
And I already had a definite dx of MS & HNPP before then. It’s doubtful these twitches will disappear for me by opening my jugular, although it might for others.
Big Point – our additional medical problems and meds could skew the data as easily as anything else. I think it's likely that even successful CCSVI treatment may be obscured by our other issues – maybe even more than the placebo effect could show a too positive impression of the results.
Thank you again, Dr. S. I have complete confidence that you and your team are capable of accomplishing your objectives even without our advice, and that your open minds will be able to adapt to unforeseen events.
As for the thread’s many other suggestions and ‘tests’ for CCSVI recovery, I hope you and your team keep an open mind about them, too...
**I DO have a definite dx of MS - I pass ALL the tests.
**I do NOT have excessive fatigue.
**I do NOT have an exceptionally low tolerance for heat.
**I do NOT have unusually cold hands and feet.
**I do NOT have exacerbations.
**My lesions didn't change or enhance between my 3 sets of MRIs.
**My numbness comes & goes almost solely due to HNPP and its quaintly named “Pressure Palsies.”
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