Risk of sudden irreversable disability is rare in MS -paper

[supermum_ms]

Hey guys and dolls,

This just came in regarding delaying DMD's, it seems to be confident that sudden irreversable disability was a rare event, it doesnt say much but thought someone might find it interesting.


http://www.medscape.com/viewarticle/719310?sssdmh=dm1.607728&src=nldne&uac=145548EG

Cheers........JJ

[Quixotic1]

I really want to elaborate on this because this is certainly going to be used to hoodwink people.  I don't have the energy right now, but I will later.

I would also like to mention that my very first symptom - as I have frequently mentioned - was the sudden inability to lift my right leg off the ground.  It was a permanent disability and has NEVER improved.  So, it may be rare, but it happened to me.

Quix

[shoshin]

Wendella247: You have to set up a free account to see Medscape articles so that might be your problem with the link.

halah: I agree with JJ and if you poke around you'll see that research shows that it's more effective to start a DMD sooner than later. Even my neuro who didn't think the DMDs were all that likely to help me (since I don't have acute relapses/inflammation) when I suggested putting the decision off for six months to see how I was told me that was completely wrong-headed and that if I thought I wanted to try a DMD, it was better to do it sooner than later.

JJ: It is reassuring to know that we're not likely to be suddenly thrust into a permanent state of EDSS 6 (Intermittent or unilateral constant assistance (cane, crutch, brace) required to walk about 100 meters with or without resting) or more, although I think this was already known from natural history studies. I guess their unique point is that the risk was not different for people on DMDs than those not on DMDs.

They start off with "The fear of sudden irreversible disability should not influence therapeutic decisions for patients with multiple sclerosis ... because such attacks are very rare." Why that is so relevant, I'm not sure, since there are a lot of other reasons why, even if it's not a "medical emergency," starting a DMD sooner rather than later is a good idea. Perhaps the more relevant question is what percent of people would be delayed in reaching 6 and for how long if a DMD was started in the window of optimum effectiveness?

They do claim (depending on how much credit you give to Cochrane Reviews) that "Cochrane reviewers and others agree that there is no methodologically rigorous study of the effects of treatment on disability in multiple sclerosis long term." It does seem to be difficult to get reliable information on this and the question is not as settled as one would hope.

I think most people would say they are adversely affected by MS long before they get to 6 or, as you pointed out, severely impaired by things like fatigue and cognitive problems that don't count for much on the EDSS.

Six also seems somewhat arbitrary. From what I have read of the natural history of MS, reaching a sustained EDSS of four is considered a sort of turning point and if people have not already become progressive, they generally become so at this point. They also tend in the aggregate (there is a lot of individual variation) to progress at the same rate from this point on regardless of previous history. So preventing a sustained score of four would seem like a more desirable target.

Well those are my random thoughts for the evening.

sho

[supermum_ms]

There is a truck load of research that supports the use of DMD's at the earliest sign of MS, not using DMD's, which at this time is the only defense, is NOT in the patients best interest!

This study is really only to REASURE the patient/neurologist that if they are delaying DMD's if the MS dx is still in question or stopping DMD's due to some issue (possibly changing DMD), it will not mean a "sudden irreversible disability" this is based on statistics. It is not saying its ok to stop DMD's altogether, let that be clear, DO NOT STOP TAKING YOUR DMD!!

What this study does not address is the less visible damage, the disability status scale is based on physical disability, it does not incorporate cognitive declines into the scale. It is only reporting on the likelihood of a patient becoming 'perminently', physically incapacitated (DSS 7+) if DMD's are delayed or temperarily stopped, not in anyway advocating for never being on a DMD.

In my mind, this study could creates a false reality, reasurance of time which is controdictory to every credible piece of research todate.

Cheers.......JJ

[halah29]

I'm confused..so is it ok to delay DMD's or should we start as soon as possible????because I really don't like taking them and if it doesn't mattier either way then I guess I would opt not to take them.  I hope I made sense.

halah

[supermum_ms]

Hi Wendella247

I just tried it again in case the link was broken, also had no trouble getting it up using amers shortened version. Try doing this (Sorry if your already doing this but just in case) see if it works for you. High light the link below and copy by using ctrl c then delete the address box and paste using ctrl v then press enter or go, that should bring up the article.

http://www.medscape.com/viewarticle/719310

Cheers.........JJ

[Wendella247]

I wasn't able to access the article--neither link worked for me.

[Quixotic1]

It has been my experience that the Marshfield Clinic echo the views of the Mayo in Rochester right down the line.  Just an observation.

Q

[supermum_ms]

Hmmm, i think there is a lot more research needed before the premise/promise will be accepted by the patient but unfortunately i suspect the neuro's will take this as gospel.

What got me, was the implication that it was 'ok' to delay DMD's and or even stop DMD's from and for the perspective of the treating or dx-ing neurologists but how do you suppose the patient would feel about this. So ok the likelihood of a catastrophic relapse is less likely but if additional disabling sx or worsening of already established sx is the result of delaying DMD's or stopping DMD's, then who gets to decide? and how comforting is that?

I doubt anyone is adequately informed or even consulted by their neuro for the delay, i'd love to hear from someone who made the decision to delay DMD's because 'they' wanted or needed to get worse before 'they' wanted the hassle of a treatment plan, there wouldn't be many, surly.

I hate to think it but this study could create a convenient truth of acceptability for neurologists to continue delaying DMD's until there is no question of the MS dx, especially if the rational behind doing so is based on the assurance that the patient with possible or probable MS is unlikely to become extremely disabled with the next relapse they have. Waiting until the patient has another relapse, will add weight and confidence for the neurologist to determine the unquestionable dx of MS.

It also totally ignores all other studies that from the evidence supports the theoretical agument for earlier treatment of DMD's, then again, this study is not looking at the validity of DMD's but as this statement says "investigators hope this new study will allay fears of sudden irreversible disability. Dr. Bejaoui and Dr. Rolak emphasize, "Such attacks are very rare." so from my perspective it was looking for acceptability of delaying treatment until the dx of MS is unquestionable.

Or am i just being cinical?

Cheers.......JJ

  

[Quixotic1]

I have always been aware of this, but how do they get around the data that the DMDs are more useful used earlier in the course of the disease, notwithstanding the number or severity of relapses?

Quix

[amers789]

Thanks JJ for the information. I am a limbolander but that is one of my concerns in case they have not diagnosed me correctly, since I have many positive results but so far they feel it is just Trigeminal Neuralgia.  Have a great day.
Amers

FYI JJ; To get to the article stop and paste up to just http://www.medscape.com/viewarticle/719310
I tried the entire thread and it did not work but it went right to it with above one..

Thanks again