Neurologist at CMSC wants to change name of RRMS to "relapsing MS"

[agate]

Dr. Patricia Coyle, who is a fairly well-known authority on MS, has stated at the recent annual meeting of the CMSC [Consortium of Multiple Sclerosis Centers] that "relapsing-remitting MS" isn't an accurate term.

From a blogpost by Ian Franks in Multiple Sclerosis News Today, June 9:

MS Does Not Remit’ – Call to Change RRMS Name to Relapsing MS

Ian Franks

MS does not remit and the out dated term causes many people to delay taking medication, says Dr Patricia Coyle, Founder and Director of Stony Brook’s MS Comprehensive Care Center.


Last week, at the CMSC Annual Meeting in Maryland, during a live-streamed presentation covered by Multiple Sclerosis News Today, she said: “MS doesn’t remit.”

Now, that is peculiar for a disease that is divided into different types, with the most people with MS having the relapsing-remitting variety.

This week I caught up with Dr. Coyle and put this conundrum to her.

She explained: “RRMS is the major type and the one in which, between relapses or attacks, the patient appears to recover completely and is absolutely stable but it is wrong to say it stops.

“In reality, the disease has not stopped at all but continues to cause ongoing damage. It goes on silently damaging the tissue of the central nervous system.

Disease hides but does not remit

“Many people take this so-called remission as a sign that the [now-hidden disease] is doing no harm. So they decide not to take medications that would help protect them from the silent attack on their nervous systems,” said Dr. Coyle.

Asked if she would rename RRMS, she readily agreed that she would. “Relapsing-remitting MS is an old name from many years ago. It is a misnomer and is misleading. It really is time we changed it.”

To what, I asked. “Relapsing MS is a better title,” she said. And I think she is right. That name says that you have MS all the time but at certain times you will have relapses, when you will get worse. “This disease doesn’t burn out, it does not remit; let’s call it relapsing MS,” she added....

What do you think? Is it time to change the term?

This is the definition of remission:

a diminution of the seriousness or intensity of disease or pain; a temporary recovery.

It seems to me that, from the patient's perspective, if there are no symptoms or signs of the MS attack, the disease has to be said to be "in remission" even though it is understood that it is still "there," hiding in the central nervous system and apt to appear again at any time.

That is what "in remission" means. It is said of a disease that can come back at any time though currently it is not showing up.

Just my opinion though.

And what about the people diagnosed with progressive-relapsing MS? Will everyone with relapsing MS be assumed to be progressive-relapsing?

[Howie]

I think they should just leave the name alone, and get on to more important things, like finding a cure!

[Jen's Solitude]

I have gone a number of years in a row without a serious attack but not once did I think my MS was gone. Maybe people newly diagnosed feel that way in the beginning but they quickly realize their disease is not gone. Maybe those who have had only one major attack feel that way especially if there follow-up MRI's are clean, but they still worry every six months or so when they have new MRI's taken.

I just find it hard to believe that changing the name serves any useful purpose. Experience tells us all that MS is here to stay even if it is quiet at times.

[SalpalSally]

I think they should just leave the name alone, and get on to more important things, like finding a cure!

Amennnnnnnnnn!

[SuzE-Q]

I whole heartedly approve and think it could help with the confusion the population seems to have about so-called "remission" states.

I agree!!

[Sunshine]

Last week, coincidentally, I asked my neuro, "What kind of MS do I have?" He said, "I don't think there are different kinds"and I said, "you know, is it secondary progressive or what?" And he said, "Relapsing MS"

At the time I thought that he forgot the word remitting. But with this thread air now think he was reflecting dr. coyle's opinion.

[SalpalSally]

When ya got it, what diff does it make what you call it.

its not as though the have diff meds yet for the diff kinds?

[agate]

They do have different meds for the different kinds though. All of the disease-modifying drugs with the possible exception of Betaseron are said to be for relapsing forms of MS even though many neuros have been prescribing them for anyone with MS.

And they have one or two new ones coming along that are for progressive MS now.

But there are those who say that this whole classification idea is too fuzzy to have any meaning, and--as you say, Sally--if you've got it, you've got it, and it doesn't matter that much what type you have.

[Sunshine]

I still have trouble believing I Have MS! Despite all the neuropathies, the L'Hermitte, the feeling of weights on the limbs, and so on. Denial is such a powerful mechanism.

[agate]

On one level I've never accepted MS as a disorder I have either. I have trouble accepting that a disease has been eating away at my central nervous system. Maybe a certain amount of denial isn't so bad though.

[Howie]

MS is an Autoimmune condition. The damage seen in MS has been done by our own bodies. But why? Has the immune system gone haywire?

I believe, and have for a long time, that one or several members of the Herpes family of viruses is the root cause. EVERYONE alive, carries one, or most likely several different ones. I think we know of 8 so far.

But Howie, the body is designed to identify, and destroy any invading viruses. Why not this one?

I've had Chicken Pox, a Herpes virus. It didn't die, I still carry it in a dormant state. It hides someplace in the body by taking on the identification of the cell it lives in.

Sometimes it is discovered in the body by the immune system, and it AND the cell it has changed identity with are destroyed. The same happens with the Herpes virus that is called MS.

But the tissue it assumes the identity of is myelin. Then at some point, the body can tell it holds a false ID, and destroys it. The battlefield is called a lesion.

The body's immune system has done what it's supposed to do, destroy foreign invaders. The Herpes virus has done what it has to do in order to survive, take on the ID of a cell to survive.

It's a war, but will continue until we take off our blindfolds, and see what is at the heart of this disease.

[Sunshine]

Makes perfect sense to me, Howie. If not your theory, I bet the reality is darn close to it.

[Sunshine]

There is an ad in today's paper for an MS information event for "Relapsing MS"... Looks like Remitting is no longer in style.

Relapsing kind of implies that between relapses there is nothing happening. Maybe they should throw out the word Relapsing as well. Cancers are rated as Stages. Maybe we can have Stsge One? Nah, don't like that either.

Any ideas of new names?

[stillstANNding]

Chronic MS?

[Howie]

You could name them sort of like the stages. Like relapsing could be Beginners MS, through to like End Stage MS.