How does RRMS work?

[pshrink]

Tawanda wrote:
I don't think MS is so neat and precise that you can simply dissect it into 4 neat little categories without a bunch of asterisks and footnotes!

And that just about says it all!

OK. Three main types of MS: PPMS, RRMS, SPMS. Within those, what you see is what you get. You can have back-to-back relapses, or remissions that last for years. You can decline fast or slow. Any label that some medic puts onto you is usually for their benefit - not yours!

My attitude is that you do whatever you can, while you still can - because it may all change tomorrow. I know the exact date on which I will be re-Dxed from RRMS to SPMS (in four month's time) and it could have been two months ago. If it had been, I would still probably have been at this keyboard, typing this post.

G

[AriD]

I have a lesion in my pons which my neuro says is probably the cause of my vertigo. I agree it's awful. My first few years that was the majority of my relapses with some left leg weakness. A couple of years ago I had a much worse relapse with vertigo nystagmus proprioception issues and more weakness. My MRI shows a "black hole"in the pontine region. I still have brief episodes of vertigo but not like I used to. Hoping it will never come back. I hope yours stays away too.

[Tawanda]

Any label that some medic puts onto you is usually for their benefit - not yours

G

Really! There are as many "brands" of MS as there are people with MS. My MS Specialist does not get obsessed with labels. He treats me individually and does not lump me under some nebulous category. I like the way he practices medicine. It coincides with my logic, anyway.

[misslux]

The "type" may not matter to others, but certainly matters to me as it determines what *I* can expect as far as decline and treatment options. I appreciated "the label" by my neuro since everything made sense after that.

(Chowda, sorry for derailing)

[Tawanda]

The "type" may not matter to others, but certainly matters to me as it determines what *I* can expect as far as decline and treatment options. I appreciated "the label" by my neuro since everything made sense after that.

(Chowda, sorry for derailing)

Personally, I would live "down" to such labels, so for me, not getting one from my neuro. I don't ask...he doesn't tell.

[Chowda]

Any label that some medic puts onto you is usually for their benefit - not yours!

What?????? If that's true where you live it really says a lot about the healthcare system where you are.

I am against labeling people... except in medicine. Doctors are NOT detectives. A general label helps you get the correct medicine. Methods of deducing things should not be done over and over. What if someone with PPMS was given DMTs? The doctor is expected to deduce type of MS because labels~~~

Take the dr =/ detective out of context, its expected

[onlyairfare]

I don't see how a doctor benefits from giving you a "label." Such a label is called a diagnosis, and in the case of DMT's it is generally necessary to have a diagnosis in order to treat you. Unless the doctor also has MS, he or she is not deriving any benefit from treatment with DMT's.

On the other hand, prescribing a medication for the wrong diagnosis (aka "label"), or failing to name a diagnosis for which a medication is given, is sometimes called malpractice.

I suspect there may be a tendency to diagnose a relapsing form of MS, particularly RRMS, because there are more FDA approved treatments for RRMS, so insurance coverage is better. The medications are so expensive that they are virtually unaffordable for most people unless they have insurance coverage.

[Tawanda]

What??????What if someone with PPMS was given DMTs?

I honestly don't know. Do you? Does your neurologist?

[Tawanda]

I suspect there may be a tendency to diagnose a relapsing form of MS, particularly RRMS, because there are more FDA approved treatments for RRMS, so insurance coverage is better. The medications are so expensive that they are virtually unaffordable for most people unless they have insurance coverage.

I suspect the same. In theory, the mechanics of DMTs sound like they could benefit all MSers, but the FDA can't deal in "theory". RRMS is the "brand" that generated the necessary studies/data for green-lighting most of the current treatments.

[Tawanda]

Back to the original question...

How does RRMS work?

What I can't wrap my head around is the fact that once you are diagnosed with MS, you are told it is a chronic and progressive disease, no matter what the label. SO, if you have RRMS, does this mean there is actually some sort of switch or mechanism that starts and stops the autoimmune system from attacking the myelin?

If there is such as switch, why does it eventually stay on, rather than off, all the time? In fact, once the switch is on and MS has been activated, can you ever be in a true remission??

[Thinkimjob]

Nah, Tawanda, I read 80 percent of RRMS victims wind up with SPMS, within I don't know how many years.

Another five percent probably top themselves before SPMS makes itself manifest. Yes, no, that was negative. Sorry. Let's be happy clappy, glory, glory, Alleluia etc.

But it is true. That's why the difference in average life expectancy is only seven years for people with MS. You can live forever with this sucker.

There's no bloody 'off' switch, worse luck. I had heard that it all slowed down to a crawl post-menopause for women, but I don't think that's right.

Good night. We're still here, and we're still with it. As Aussie boxer Jeff Fenech used to say, "Love youse all."

[Marco]

Hopefully this doesn't muddy the waters ...

For many MS patients there are two distinct phases of the disease. The first phase is primarily inflammatory in nature. The second phase is characterized by less inflammation and more brain decay/nerve damage. The DMTs work much better in the first phase than the second phase. The DMTs prevent relapses, inflammation (Gd-enhancing), newer damage (T2 lesions) and black holes (T1 lesions). In SPMS, there are fewer relapses and less inflammation so DMTs are simply less effective. That's one key reason to get on therapy as soon as possible and try to delay the onset of SPMS. Many times people believe they'll always have time to get on therapy once they "need to," but disability may have already set in. The goal is to PREVENT disability not try to reverse it after onset.


Example: A 20-year old gets diagnosed with RRMS and moves into SPMS at age 45. That means for roughly 25 years they have RRMS and will primarily be battling inflammation and relapses. A DMT should prevent a number of relapses, a load of lesions and disability progression during this time. After the onset of SPMS (much fewer relapses, if any) the DMTs won't be as effective for that patient.

In PPMS, there are no relapses so DMTs cannot reduce that number below zero. I think some patients are intentionally labelled as RRMS to keep all medication options on the table.

[pshrink]

This is really addressed first to onlyairfare, but the question of putting a neat label on any of us (or any victim of another disease) can be worth discussing. OK, so I argue that labels are for the benefit of doctors.

Lets take one label - benign - and see what happens.
Fred is Dxed with "benign" MS. Benign has no clinical definition, so the word is just a label. What it does is to save the doctor from writing out a long sentence or two that describes how Fred's MS has been fairly gentle with him, and he has not had a relapse for (say) seven years. What does this do for Fred?
A touch of the warm fuzzys, maybe, but nothing else good.
The doctor wants to start Fred on a DMT, but the insurance company spot the word benign and say "Oh No" - Fred does not need this and we will not pay.

Ask any psychologist about the human tendency to apply labels as a means of facilitating communication, and be prepared to have your ear bent for quite some time. I do not know if this applies to all languages, but since the principle language of psychology is English, it might just be a characteristic of English speakers. Having said that, I can think of a few instances where the Germans have created a new word to avoid lengthy explanation, so it might work in that language as well.

And, if you are not sure about the power of a word or two, think about the way in which Frank getting a Dx of "Manic-Depressive" is really bad, but a Dx of "Bi-polar Disorder" is fashionable. Of course that may say something about a part of society - just try to work out which term was in general use first, and why the medical profession thought the other term was needed.

G

[Tawanda]

In PPMS, there are no relapses so DMTs cannot reduce that number below zero. I think some patients are intentionally labelled as RRMS to keep all medication options on the table.

I agree. The million dollar question being, do DMTs still slow down progression, if not relapses? My understanding (again with the oversimplified PacMan theory), that "treatment" provides our immune system with something to gnaw on other than our actual myelin.

I read on this forum about a nurse with MS unpacking a new patient's belongings at the nursing home she worked at and finding either Avonex or Copaxone in the patient's possession. The nurse (who had never disclosed her own diagnosis) was understandably rattled at this discovery, but why this patient who could not even inject herself still be on a DMT (and presumably, still be labelled as RRMS?)?

I am just trying to illustrate how complicated labels vs treatment is. It is art more than science it appears. We MSers just continue to swim in a giant sea of confusion, eh?

[misslux]

Now its a lot better, not as good as that one day but a lot less. Like everything else.

EVERYTHING HAPPENS SO MUCH.

Glad you are doing better though!