I just went and checked out FACIT. There ya go! That's more of a whole-body approach. (And I especially like the one where it measures your satisfaction with your medical treatment, doctor and staff! More doctors should give that one just to measure their OWN effectiveness in their chosen profession.)
And besides...........what may be considered "disabling" to one person, might not be considered as such to another. And what is considered disabling differs between one doctor and another, also.
Two doctors found "permanent" CNS damage (and that was even before I was diagnosed. That's what led to me being tested further in the first place. The "permanent" damage that was found and they wanted to know why....what was happening to me.) I was measured outside the clinical trial via EDSS. To establish baseline disability for the clinical trial, I was rated pursuant to the MSFC. Both scales found "permanent" disability. Note the word permanent. HAH! (Don't ask me why neuros don't use the MSFC in practice. It at least measures three areas: leg function/ambulation, arm/hand function, and cognitive function. The EDSS is measured via walking ability. Cognitive measurement isn't factored into that one at all.)
The NMSS has a list of tests used in MS. (Most of which I notice are only used in clinical trials, not by neuros in everyday practice.)
9-Hole Peg Test (9-HPT)
Ambulation Index (AI)
Bladder Control Scale (BLCS)
Bowel Control Scale (BWCS)
Disease Steps (DS)
Functional Systems Scores (FSS) and
Expanded Disability Status Scale (EDSS)
Health Status Questionnaire (SF-36)
Impact of Visual Impairment Scale (IVIS)
Mental Health Inventory (MHI)
Modified Fatigue Impact Scale (MFIS)
MOS Modified Social Support Survey (MSSS)
MOS Pain Effects Scale (PES)
Multiple Sclerosis Functional Composite (MSFC)
Multiple Sclerosis Quality of Life-54
Multiple Sclerosis Quality of Life Inventory (MSQLI)
Paced Auditory Serial Addition Test (PASAT)
Perceived Deficits Questionnaire (PDQ)
Sexual Satisfaction Scale (SSS)
Timed 25-Foot Walk (T25-FW)
I don't know.........whatever happened to being "thorough" before "labeling" a patient as anything at all?
I'm the perfect example. If I had "believed" my neuro, who said I was a 2 on the EDSS and that I should just face the fact that I was only going to get worse, where would I be psychologically right now? I know he was trying to be "kind", trying to prepare me for what was to come, but come on...........anybody hear of the "power of suggestion?" And besides, I've got the kind of personality that if you "tell" me anything, it pisses me right off. I said to him, "Oh, yea? Well, you watch me go!" If he wasn't going to help reverse my symptoms, I'd do it myself!
Besides, I proved him wrong anyway, didn't I? Now a physician is hard pressed to find anything at all wrong with me. Everything completely normal (as based on their same "tests").
Good thing I did NOT start on any CRABS, huh? I'd probably be sicker than a dog, and WOULD be still going downhill. I (somehow) totally reversed all of my symptoms AND my disability rating.
I have to keep at it, though (i.e. therapeutic management) in more ways than one, i.e. drug treatment, exercise (if I skip, I feel it!), vitamins, positive attitude, etc. It's not easy for me to stay healthy, that's for sure. And it's a lifelong process. Whatever they want to name my CNS disease, it can't be totally cured. And frankly, (and I haven't even told them this, because I got tired of 'em...hehehe....), I do see some "permanent" damage in my left leg, mainly. I was only able to reverse that leg to a certain point. But can you tell? No. And neither can they. But I know. I can feel it. I have to stay ahead of that leg, so to speak. So I can tell that leg has suffered irreversable damage - I could only get it back so far - but it's minor now.
Anyway, I rest my case.