
Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.

deleted_user
Can someone explain to me the difference in symptoms that go away and symptoms that don't? I mean I have RRMS, right? Then why do I not get better??? I've been DX for almost 3-years now and I'm wondering if I am actually PRMS instead. The original symptom of optic neuritis got better, not 100%, but butter. Then I started getting this numbness and tingling and L'hermittes Sign, and that stuff never goes away. The fatigue never fully goes away. I don't understand the difference. Can anyone explain this?
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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)
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.
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
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
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?
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
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
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)
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