Dear all,
A couple of questions:
When I was dx'd in May my neuro said that I had ms, he's reasoning - the MRI showed scarring in two areas of the CNS (brain and spinal cord). When I went back to see him four months later (as he had asked me to) he saw that I was distressed at the thought of having such a vile disease for the rest of my life, and said quote 'you've only had one attack - hardly multiple is it?'.
I have seen a couple of recent articles (for example the article on this site - 'IV Immunoglobulin After First MS Event Is A Preventative') that have claimed that certain treatments after the first ms 'event' can prevent the onset of ms / delay the onset of ms. If I suffered a heart attack, the medical profession wouldn't require me to have a second attack, before confirming that I had heart problems, and they would provide treatment at the time of the first attack. Why is ms treated differently? If some treatment after the first ms event is preventing or delaying the onset of definite ms - why isn't this treatment being given now? Is there any cases of individuals having an ms 'event' (I assume they mean an attack) and never having another?
As bad as this disease appears at first, it seems to get worse and worse the more I research it. The latest articles I have seen refer to brain 'atrophy'. I assume atrophy means 'death'. One article suggested that brain loss from ms could be in the region of 1-1.5% per year. Does this mean that in 20 years (if I live this long), that I will have lost c.25% of my brain? Will I need smaller hats?
I'm more and more convinced that the devil himself was given a free hand in the creation of this disease.
Bromley
When is MS - MS?
Hi Bromley
Fortunately for some, you can have just one event and then never suffer another one. It is called benign MS. There are several types of MS and you may be lucky enough to have the benign type. If you have no further events, why would you want to subject yourself to years of maybe unnecessary treatment?
The treatment you refer to I think is being carried out in Israel. I agree with you that it should be available to everyone. The problem is, as a lot of treatments, it is still being trialled. Fingers crossed for the future!
Magpie
Fortunately for some, you can have just one event and then never suffer another one. It is called benign MS. There are several types of MS and you may be lucky enough to have the benign type. If you have no further events, why would you want to subject yourself to years of maybe unnecessary treatment?
The treatment you refer to I think is being carried out in Israel. I agree with you that it should be available to everyone. The problem is, as a lot of treatments, it is still being trialled. Fingers crossed for the future!
Magpie
Bromley
I had a neuro consultation last week - we're getting to know one another a little better now after 6 months so it was more of a polite conversation really - and he suggested that MS eventually is likely to be seen to be many diseases with a common core of symptoms. A model for this exists already he tells me with Epilepsy which is now thought not to be one condition as it was 40 years ago but hundreds!
I'm suspicious of the way we are shoe-boxed however, "You've got RR you PP; so this will work for one and not for the other. " Whether its one condition or many I see they same pattern in our ability to do things and reckon that beneficial responses to these patterns are likley to be common to all. [Just as a side rant I get really hacked off with researchers using the EDSS scale how dare they measure my disabiltiy and not my ability! And its mathematically dubious too!
]
I had a neuro consultation last week - we're getting to know one another a little better now after 6 months so it was more of a polite conversation really - and he suggested that MS eventually is likely to be seen to be many diseases with a common core of symptoms. A model for this exists already he tells me with Epilepsy which is now thought not to be one condition as it was 40 years ago but hundreds!
I'm suspicious of the way we are shoe-boxed however, "You've got RR you PP; so this will work for one and not for the other. " Whether its one condition or many I see they same pattern in our ability to do things and reckon that beneficial responses to these patterns are likley to be common to all. [Just as a side rant I get really hacked off with researchers using the EDSS scale how dare they measure my disabiltiy and not my ability! And its mathematically dubious too!
]John
I am what I am
I am what I am
John,
I hated that, also. I totally agree. I always wondered on what criteria were they basing "disability" on. Everyone is different.
For instance, (and I think I used to really give my neuro a hard time), but I'd say........ok, do you want me to walk without instituting the compensations I subconsciously make to adjust for impairment or do you want me to walk WITH the compensations I utilize (which will then basically appear to them that I have little to NO disability)? Same thing with pain. Do I yell "ouch" when I feel pain (which I have to consciously concentrate on) or do I ignore the small symptoms as much as I can, thereby lessening the pain I "think" I feel? Same thing with checking my "eyesite". I.E. "Read this chart". Ok......once I read it with my right eye, and then am told to read it with my left eye, how in the world can I do that when I just read the exact same letters! How much am I now utilizing memory-wise as opposed to actual visual acuity?
My old neuro would say "stop that!" (i.e. compensating). I said it's second nature, not conscious! I've never in my life NOT had to make adjustments for my physical impairments, so I don't know any difference. It's automatic. HAH!
Disabled does not mean unable! Mathematically dubious is right!
Deb
EDIT: (As always...) By the way, even after all that, I was classified as a "2" on the EDSS. Now, I'm back to zippo.........zero.........So, yea, I put a lot of faith in the EDSS.
I hated that, also. I totally agree. I always wondered on what criteria were they basing "disability" on. Everyone is different.
For instance, (and I think I used to really give my neuro a hard time), but I'd say........ok, do you want me to walk without instituting the compensations I subconsciously make to adjust for impairment or do you want me to walk WITH the compensations I utilize (which will then basically appear to them that I have little to NO disability)? Same thing with pain. Do I yell "ouch" when I feel pain (which I have to consciously concentrate on) or do I ignore the small symptoms as much as I can, thereby lessening the pain I "think" I feel? Same thing with checking my "eyesite". I.E. "Read this chart". Ok......once I read it with my right eye, and then am told to read it with my left eye, how in the world can I do that when I just read the exact same letters! How much am I now utilizing memory-wise as opposed to actual visual acuity?
My old neuro would say "stop that!" (i.e. compensating). I said it's second nature, not conscious! I've never in my life NOT had to make adjustments for my physical impairments, so I don't know any difference. It's automatic. HAH!
Disabled does not mean unable! Mathematically dubious is right!
Deb
EDIT: (As always...) By the way, even after all that, I was classified as a "2" on the EDSS. Now, I'm back to zippo.........zero.........So, yea, I put a lot of faith in the EDSS.
Have you seen FACIT ? I got to a link when tripping around one day, designed originally for oncology patients but there is an MS version. As I getter bolder in my neuro consultations I might float this past him. On the one hand I want to be able to measure my condition - on the other I dont want any more bad news it might harbinger!
John
I am what I am
I am what I am
Hey, John!
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
(MSQOL-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.
Deb
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
(MSQOL-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.
Deb
