one told me that i'm primary progressive but the others have said rr.i think that even if you have symptoms that are permanent if you have exaserbations where symptoms get worse then you feel better then it is rr. pp is when you just steadily get worse.when we have nerve scarring with a new symptom that's when it doesn't go away.at least that's how it was explained to me

RR is just that--relapsing/remitting. This is what I have. My understanding is that I can still get new symptoms, keep old symptoms, have symptoms disappear or even get worse (which they do if I'm under too much stress or don't get enough sleep). I think the biggest difference between RR and PRMS is the progression of the disease. PRMS has a faster progression and when an exacerbation occurs, I don't think that the symptoms leave? I'm not positive. 50% (as I have read and been told) of those of us who are RR will progress to Primary secondary MS. My odds for progression are higher than a lot due to the age that I was diagnosed (over 40 or 45 odds of progressing to secondary increase). Right now I believe that I am in a 'remission' of sorts (if this is the correct term) as the disease is kind of in a 'holding' pattern. In other words, I still experience symptoms, in different degrees on different days, but have not gotten any worse. Does this clarify the difference? I'm not even close to being an expert--just have done a lot of reading and this is what I have come to understand about these types of MS.

It sounds to me like you may be slowly progressing, but that your diagnosis of R/R is quite possibly correct. I hope so.

I'm sure that others on this site will have an even simpler way to differentiate between the two and I look forward to reading their posts!

Michelle (aka Eloise)

Boy I would love to pin down that answer! I have read and read and read and still not sure what I have. I am newly diagnosed and no one thus far has jumped on tagging me woih one or the other.
i have good days with minimal to no symptoms and bad days where I feel like road kill.
I have yet to be back to "normal" especially with fatigue and chills and sweats.
my understanding with RR was that you have an exacerbation and initially it goes away but as the nerve scars the going away becomes less.
PRMS, i have read, is exacerbation then an improvement to a plateau without compete resolution.
yeah...clear as mud! we have discovered a great book and just got my "starter/welcome" kit from National MS Society. the book is : MS Tool kit.
I look forward to others response because i would love to understand better.

i know one definate difference...grin.... those of us who are progressive...cant get the crab therapy drugs....we only get managnment drugs.. meaning.. for bladder,, pain... tn pain..etc...

my understaning is that instead of hitting highs in symptoms we would just steadily decline....

and not come back..like rr does at times... for example when someone with rr says i am having a good week this week.... those with progressive ...do not... simple....grin...

anyone want to jump on board and correct me if i am wrong|??

hugs
heather

I think you're about right Heather. I was RR, but I believe I am now SP or PP as I haven't had a good day, little own a good week in a very, very long time.

Thank you all for your responses. At the very least I have learned that I am not the only one who doesn't get it. At the most I have learned that I'm probably just fine.

Great thread thanks. I'm unable to contribute as I'm yet to be diagnosed at all and I'm still hoping like mad that it's not MS (no offence intended). However the more I read, and as my symptoms emerge, the more likely it seems. I see a neuro for the 1st time early next month and hope they will come up with a completely different explanation *resigned sigh*

I don't mean to speak a heresy but I don't think it matters. My doctor first diagnosed me as RR. When I told him I thought I was just getting progressively worse, he said I call you RR because that is the only way I can prescribe you Betaseron (at the time all there was).

Except for having a name, does it really matter? Are you going to do anything differently (you should eat right, exercise, take your shots... but what else will you do depending on which type of MS you are labeled with?

I guess I think it is an interesting game to think about it but personally (and this is no criticism to any body else).

Larry

Larry,
You make a very good point. What would I do differently? I have no idea. Probably nothing, but then again, if I find out I am progressing maybe I would do more things now that I may not be able to do 5-years from now, ya know? I think we should all just do that anyway - even if we didn't have MS, right?

ButterflyFan,
I think you said it, if there are things you dream about or think about doing, regardless of the 'type' of MS you have, you should set your sites on doing them.

You never know what will happen with this disease but, really, that is generally true about life. I just wanted to make the point that the 'type' of MS (except for limiting what drugs dr. can prescribe) if really irrelevant.
Larry

Actuallu i think it does make a difference what type you have... if for example i had rr ms and it was dx as mild... and i had not had a flare up in say a couple of years... lets use that as an example...

i would possibly be on a crab drug to hold off any further flares....

i am not ...becasue i am progressive...

if i was mild rr.... i would not have to worry about investing the same amount i spent on my childs college tution on medical equipment...grin... but i have...

i now am the proud owner of a wheelchair... a cane..(bright red)...a fancy walker with special handles(again bright red..heh heh )..

a foot brace for drop foot...sigh... could not get it in bright red...grin...

and after going on a simple walkathon my legs went numb at the 1km marker i am sure i will upgraded to a scooter in my near future which in turn will result in my moving in the near future...sigh...

so yes it does make a difference what type you are dx with...

ask anyone who has progressive ms and i am sure they will tell you that it makes a difference...

hugs
heather

heather,
I don't know. I just take the symptoms as they come. I do have a wheelchair because it was really handy at Disneyland.

Just as my Doctor treated me when I said I thought I was progressive (still called me R/R so I could get Betaseron at the time).

If I need a walker, I'll get one (same for a scooter or brace for my drop foot.

I didn't buy a chair believing ending up in one was inevitable (just fiscally prudent).

Until doctors convince me that the label is consistent and useful, I still consider it a mental game.
Larry (BTW I am no Pollyanna about this. I hold out hope for a cure but don't expect it. I will keep exercising until I can't. I just don't see any benefit to buying medical equipment for some 'maybe' time in the future)

exactly....grin.... that is the difference...lol.... for those that are progressive... that maybe time is now...

that is the point i was trying to make....smile... i use all the medical equipment i have... i am stubberon about the wheelchair though...i will admitt to that one...grin...

but the walker and cane and foot brace are a necissaty of life for me.... scooters are a necissaty..(damn my spelling sucks...grin) for some of my other progressive friends....it is not a matter of looking into the future...the future is here and now... i dont want to think of 20 years down the road... i shall bury my head in the sand regarding that one....grin... and pleasntly leave it there by all means...lol....

hugs
heather

sounds to me like you are in mroe of a sprr while you have the same level or worsening of old symptoms you can still get new ones or variations of old ones

translation this disease is a bitch