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
You may be very unusual. A long, long,mild case that hasn't converted after 30 years (or have you?). Certainly I lost the cooperation of my doctors at just the wrong time. I was ripe for the nocebo effect to affect me, but it was a real attack and eventually I was not only SPMS, but unable to walk, drive, play guitar or piano, or work at my job, which required a lot of cognition. Fortunately I can still think and type.
But it sounds as if you are still doing fairly well, and can wait a year or two. You are walking, working, and probably driving. Contribute, I have been there, done that. I just want my veins dilated. I just found out Montreal won't give me the MRV because of metal stents in my chest. So I am going there, but only getting a Doppler ultrasound. I was one of the ones who had had an appointment made before they were shut down.
I guess they must have a strong MRI machine. Oh, well, I have had enough Gadolinium to last me.
It didn't seem possible that it could happen to me. I was certainly hard to convince, but after enough falls, I got the picture. Three things contribute to my falls. Lack of proprioception, spasticity, and no balance. Fatigue would if I could walk. That's like somebody I knew who was only 20 or so and had PPMS. She said she never sweated anymore, because she didn't have the energy. I wasn't that bad yet. Sensitivity to heat is nearly universal. If you don't have it, you probably don't have involvement of your thermometer. Hope you never get there.
When I was in rehab I was the mild case. Now I have a hard time dressing myself too.
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.
Heart disease count? Anyway my father had what doctors called peripheral neuropathy, and I suspect he may have also had CCSVI. Will never know.
Definitely the variety of vascular issues. I have no problem distinguishing my CCSVI/'MS' symptoms from anything else even though I am somewhat cognitively challenged sometimes. When I have angina, I know it is not my MS (although nitro gives me headache).
**Which symptoms relate so directly to CCSVI that they can be tracked before/after treatment
Just look at a list of typical 'MS' symptoms
**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
I'm not on any DMDs, and I'm on a soup, but doctors and pharmcologists have agreed there should be no problem, unless I take things like modafinil at the wrong time of day, and can't sleep. Heart patients have their own soup. I'm used to it, and none of them affect my MS symptoms in a bad way. Drugs that do, I avoid. I can give you examples, if you're curious.
**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
So how do *you* quantify it? Is it measureable? How? In my books, it's still voodoo/junk science. I've been on it for 2 years, and not subject to either it, or nocebo. Just disease progression. People know when stuff works. Especially venoplasty.
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?
Neurologists all spent about 10-20 years in the old school. I don't think we should try to re-invent their area of expertise. These versions are used because they *are* useful, over a broad range of patients. Maybe they don't know all the causes yet, but they've been studying 'MS' for a long time. 'MS', shlemess, it is still the same disease, in spite of CCSVI.
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.
These tests are not meant to be repeated every day. If my EDSS were measured every day I might be slightly higher or lower, but usually in the same ballpark. I use a wheelchair to avoid falls, but I can still limp along with my walker. I have read the EEDSS, and I would categorize my progress differently: Walking, walking with fatigue, cane sometimes, cane all the time, walker sometimes, walker all the time, wheelchair sometimes, wheelchair all the time, and I know what the next few and the last one are and I don't want to talk about it.
For example, I have dozens of measurable MS issues, but fatigue is NOT a problem with me.
It is very common, and includes muscle fatigue, as well as the complete lack of energy so reminiscent of fatigue syndrome that some are misdiagnosed. So common, in fact that there must be few who can claim that it is not a problem.
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.
I agree. Before I got diagnosed (by MRI) I got a bunch of those. Some so primitive that as an electronics technologist, I thought I had time-warped at least 50 years. Didn't do a *thing* for my diagnosis. But fear not. Nerves do rebuild, although they must be among the slowest type of tissue.
**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.
You may be some kind of outlier. I'd let you in my trial, but only if you behaved yourself. I might have to throw out your data points.You may be some kind of outlier. I'd let you in my trial, but only if you behaved yourself. I might have to throw out your data points