RRMS vs other forms

[alliesmommy]

Hello all,

Newby here and still have a bunch of questions..... was dx'd 3 weeks ago with rrms.

I know the majority of people with MS have the relapsing remitting type, but is it possible to go to another form and if so, how does that happen or what critera is needed for doc to say that it has?

[cosake]

The answer to your question is yes, RRMS can progress into another form of MS.

You should review this info from the NMSS and it will explain more: http://www.nationalmssociety.org/abo...-ms/index.aspx

[oso49]

Progression to another disease track

I believe that "alliesmommy" was looking for (as am I) more information on how does one tell...or how does one's neuro conclude, that one has progressed to another track of MS?

What symptoms? What tests? What indications?

Thanks for any help...

[0485c10]

Lots of indications...but doc's are very reluctant to acknowledge them until they have to...partly because of insurance...some insurance refuse to pay for the meds unless someone is RR, the stage the meds have proven to be effective in...the treatment that currently exist focuses on relapses and lesions, the meds reduce those. since the meds that are out there to treat MS will treat the RR phase, its much better to stay classified in the RR stage and use what meds that are available too long that stop them too soon when the could have helped.

i understand your anxiety to know, get rid of uncertainty, but this is the kind of uncertainty that is good for you, i & all people with MS that are RR..there is no benefit to becoming SP too early, absolutely none! too late is better. (SP is not like periods and teenagers)

its much better to stay RR too long.(SP isn't like the peter pan syndrome either )

some sites to investigate this are ..if you select 'its Types' you will get to 11 signs of progression from rr to sp.

http://www.thjuland.net/multiple-sclerosis.html#T

RR is usually at an EDSS level of 4 or lower, SP is usually greater, for a few years. i have heard doc's will give a few years for symptoms about 2 years to resolve before calling them likely permenant...i was up at 6.5 for a few months, with balance, now i walk independently. frustrating i would get out of bed and my nose would break my fall if i tried to walk across the room, so a walker was sitting by my bed to be uses always. bilateral support, i think is 6.5 & now i walk independently for 1-2 miles..
but for about 2 years at times i needed a walker, cane. i'm still rr and use meds.

http://www.thjuland.net/edss.html

and this site gives graphs of progression

if you scroll down it gives lesion patterns relapses at each stage and how they change and it gives a bar graph of how much time a person spends at each edss level on average. average a lot of times doesn't help much because no one knows where they are in the averages.

when you look at the time vs disability graphs be alert to the green line of "clinical threshold" below that level a person has no knowledge they are happening & neither does the doc. the mri can see those silent lesions...

notice at first the relapses are totally below the line, then they are above the line but heal below the line, a person isn't aware of the fact that they left any damage..... then both the relapse & what they left is above the line called incomplete recoveries...then # relapses/lesions gradually go down until damage is done without them. that's progressive. but secondary progressive has 2 stages one with relapse & one when relapses are no longer present.

http://www.mult-sclerosis.org/msprognosis.html

[0485c10]

I believe that "alliesmommy" was looking for (as am I) more information on how does one tell...or how does one's neuro conclude, that one has progressed to another track of MS?

What symptoms? What tests? What indications?

Thanks for any help...

oso49, i saw your post & i actually thought it was such a direct question, much like when a child asks why the sky is blue...it was such a profound post, it never occurred to me this might be the information you were looking for---i was absorbed in the question...what is the meaning of progression--linking it to all kinds of things that progress--not just ms.(my bad on an ms message board)
it proves to me, my theory a person can never ask the same question in different ways enough. to collect "a part" of the answer to the question.

[Thinkimjob]

You'll probably know long before a dr will call it. When I was diagnosed, I was told the damage you had after 10 years was three-quarters of the damage you were likely to get in all.
I had virtually no visible damage after 10 years. I got tired quickly, and an hour body-surfing meant two hours sleep. Benign MS, right? Ah, no.
The last three years have been one long accumulation of limps, balance issues, cog fog, exhaustion etc.
That's because the damage is always being done, under the surface. There may be nothing you could call a flare, but MS is still there.
I've taken dmds from the start, but I think I'm now SPMS.
It's not that different from RRMS. You just feel generally blah most of the time.
If you're newly diagnosed RR, there's a pretty good chance you'll have a lot of good years. Make the most of them.

[oso49]

For 0485c10: I unsderstand; not to worry. Thank you much for the reply.

For Thinkimjob: Although newly dx, based upon my history, neuro says MS could have been present for 15 years. My one main symptom - pain/pins and needles/numbness in the feet - is now sharing me with cog-fog, dizzieness, equilibrium problems and just of late, an episode of spasticity (I think) where the muscle on the outside of my lower left leg turned rock hard, accompanied by excruciating pain and the inability to walk.

So...is this "progression"??? My next neuro appt isn't for two months but I'm trying to get in early.

Thanks for your time and info. I really do appreciate it.

[0485c10]

Can i take a 2nd try at the question?

i have been told that ms is a disease that progress in all stages of the disease. if its ms it is progressing...its just the ways it progresses is different in the 2 stages of RRMS & SPMS.

In RRMS the progression is episodically and progression occurs through incomplete recoveries after relapses.

In SP or the more progressive forms of ms is continuously progressing. usually from what i read its a slower, continuous decline, steady decline. Where a relapse can happen suddenly, the recovery takes some time to find out what the incomplete recovery(decline) after the relapse is. sp is steadier and slower without that rapid relapse? (I'm RR so i defer to anyone already progressive)

to make it more complicated the transition from an episodic form to a continuous form is not like an on-off switch, one day MS is episodic and the next day its continuous..

if you look at those links of the graphs..its actually the stages are...
RR->Worsening RR-> SP with relapses still present -> SP with relapses no longer present...

so for a period of time it is both epidical and continuous at the same time.


more articles on this transition, i am obviously interested in it myself...

http://ms.about.com/od/multiplescler...signs_spms.htm

if you have ms, yes its a sign that your ms is progressing. ...because MS is always progressing whatever stage it is in. that's what is making your question hard to answer. if your ms is episiodic(RR) you just have to wait to see if it improves...no one can tell you that. only time will give you the answer.

[0485c10]

oso49,
i was a later diagnoses, told i might have MS 18-19(?) years before i was told i actually had MS--the good old days before the mri's were available..we slipped through the cracks.

this was the best article that described what happens to us late diagnosis..also unpredictable....

http://www.mscenter.org/images/stori...er09lowres.pdf

[oso49]

0485c10,

Thank you. All of what you said makes real sense. I appreciate your time.

Take care.

[Thinkimjob]

The other problem, as you said, is time of diagnosis. I really hadn't felt right for years before my eye stopped moving and my legs went numb. These being obvious neurological problems meant a quick visit to a neurological, an MRI and a box of interferons.
But before that, I felt blah for years, but not blah enough to go to a doctor.
If I had, who knows? Probably the land of limbo.
Progression is no fun, but unless you are PPMS, it probably won't be that fast. I'm talking many years, not a few months.
And just to further muddy the waters, no two cases are the same.
Ah, MS, dontcha love it?

[Citlalli]

Brain Reserve!

O495c10--thanks for the link to some of the new research on disease "course." I'm one more of those people with an "atypical" pattern: wheelchair to walking several times over decades.

My doctor always said I had terrible relapses but great remissions, which was true. Now I'm stalled in a four-month relapse that just seems to be getting slowly worse and wondering if this is the-one-that-came-to stay.

I'm intrigued by the notion in the piece you recommended that suggests some people have more "brain reserve," which helps them continue to remit (allows their brains to create alternate pathways).

In a folksy way, I attributed this in my own case to speaking many languages. Who knows?

In any case, the article seems to suggest that a person's brain reserve may eventually get used up, which would explain the so-called conversion to progression.

I do believe that it's important to believe in the best possible scenario unless proven wrong, though it's hard to do when heavy symptoms are staring you in the face!

I've also read that doctors say wait two years before considering any symptom permanent. Having recently been introduced to spasticity, two years seems like an eternity. I'm in that waiting game, trying to figure out how to get on with my life even though I can't get on down the block. I guess that's the symptom called uncertainty. Am I disabled? Yes. No?

Sorry for long rant, but this thread hit home for me.

[owlnona]

O495c10--thanks for the link to some of the new research on disease "course." I'm one more of those people with an "atypical" pattern: wheelchair to walking several times over decades.

My doctor always said I had terrible relapses but great remissions, which was true. Now I'm stalled in a four-month relapse that just seems to be getting slowly worse and wondering if this is the-one-that-came-to stay.

I'm intrigued by the notion in the piece you recommended that suggests some people have more "brain reserve," which helps them continue to remit (allows their brains to create alternate pathways).

In a folksy way, I attributed this in my own case to speaking many languages. Who knows?

In any case, the article seems to suggest that a person's brain reserve may eventually get used up, which would explain the so-called conversion to progression.

I do believe that it's important to believe in the best possible scenario unless proven wrong, though it's hard to do when heavy symptoms are staring you in the face!

I've also read that doctors say wait two years before considering any symptom permanent. Having recently been introduced to spasticity, two years seems like an eternity. I'm in that waiting game, trying to figure out how to get on with my life even though I can't get on down the block. I guess that's the symptom called uncertainty. Am I disabled? Yes. No?

Sorry for long rant, but this thread hit home for me.

I can't belive you have to wait 2yrs. before you concider a symptom permanet! I'm too old to wait that long,LOL.
Whats bad is when a new sympton over laps another,like foot drop & spasticity,I have both & what a pain! Talk about not getting down the block,I find life happens while I'm just thinking about it!
I agree it hit home for me too! Thanks for your input.

[Citlalli]

Drop Foot & Spasticity

Exactly what I'm dealing with. Makes it a super challenge to do much of anything. One week on Baclofen and couldn't be more grateful, but it's still not undoing all the cramps. I'm just winging it with cane and walker and not going more than a block. Was hoping to swim my way out but can't get near the pool. Seems this relapse just keeps adding layers.

Sorry to complain, but is this really what it's like for so many of you? I can handle anything if I think it's going to go away, but if this stuff is here to stay it's a whole other story. I try to keep the fear at bay, but that's easier to do when you're in remission. Have done a lot of Buddhist meditation and love it, but I still find it hard to apply the basic wisdom of living in the moment, one day at a time.

[salamandertom]

I think a very good way to think about the difference in the progressions is the charts they use. RRMS is steps between flares and remittances. Not everyone goes into SPMS, but a lot do. That line is linear so you are constantly progressing instead of when you are flaring. Now this is a pretty simplified way to think about it, but it will work for now as you are constantly progressing even in RRMS - but it is very complex and even the doctors don't have that great of a grip on it. PPMS is a constant progression from the start. There are no remittances. So, some people will have periods between where they are feeling "better" then feel crappy again - that is RRMS - vs SPMS and PPMS where you really just don't have periods of feeling "better".

I hope I explained that okay. Look at the charts for RRMS and PPMS, they will help with my narrative - mabey! LOL.