Qestion on 10 year mark of MS

[Heartshome]

I've read that the magic "10 year" mark can indicate the future of your disease progression in MS. My question is: Is it 10 years AFTER you've been diagnosed? Or..10 years after the onset of symptoms.

Since so many people take so long before they are officially diagnosed, how do you determine this?

[Roxie0818]

my neuro said 10 yrs from the onset..... usually when u start telling neuro when the pain all started.. thats what determines the onset.. so my doc says...  he even told me 5 yrs is a good indicator too....  but you know how "funny" this disease can be too and how different docs have their own opinion.

[BondyinOz]

What do you mean you can tell? I'd love to know more about this. I am unDX but my Dr thinks I could have MS. If you look at when I started symptoms it was 1996 and I was 13 years old. I then had another 'bad episode' which was DXd as Endometriosis and CFS (with Fibro) in 2002/2003/2004 at 19, 20, 21. The bad episode lasted a while I guess hehehe  And now I've been sick again since April 2007 with those symptoms and more.

I guess it depends if this is MS and if 1996 was the first 'bout'.

So what do you mean how I am now (coz is only just over 10 years) would determine the future? I have to admit I have been rapidly declining these past 6 months, and especially in the last 3.

Mel

[Heather3418]

I am 12 years from diagnosis.  The doctors say that 5-10 years after symptoms started and diagnosed with MS; is the magic markers.  Or that's what they tell me.

The MS I have, which you know there are different kinds, seems to be stable in the sense that I experience no new symptoms, but worsening of the old.  As we age, we tend to get a little worse.  I think most of it has to do with having a neurological problem AND the aging process.

I still have somehwat of a relapsing/remitting course, but have symptoms all the time.  Like I said, just a worsening of current symptoms, from heat, infections, extreme stress, etc.

I was told that since I do not need any aid to walk after 12 years with a diagnosis, that it probably indicates that I never will.  My Neuro says no wheelchair is in my future.  I guess I need to trust what he says.  Maybe.  Of course, I hope that I don't go down any further.

I still hold out hopes for a cure and a reversal, before I leave this earth.  It looks like a reversal of the damage caused from MS is getting more news coverage than a cure.  Seems the researchers are doing more along the lines of trying to find ways to remeylinate damaged areaas.

So to answer your question at the ten year mark.  If what my Neuro says is true, if you are relatively stable now, you will continue along that course, or on a very slight declining course.  Would be interested to hear what the others on the forum think.

Heather  

[BondyinOz]

So if you are declining at the 10 year mark, that is you're experiencing new symptoms and/or deterioratng, that means you're going to keep declining? Sorry if I sound silly but I just want to understand. :-)

Mel

[Heather3418]

I could stop the decline or slowly worsen.  I do not fully understand this myself.  Perhaps Quix could chime in and offer us both some more information.

[BondyinOz]

Hoping someone will have an answer on this for us :-)

[Heartshome]

Can you chime in on this? I'm sure that it would be of interest to a lot of people here. Thanks!

[MrsPriz]

In my last visit to my neuro we talked about relapsing/remitting verses progressive (I think that was the word she used...  hmmm).  My official dx was just 6 months ago, but the first recognized incident was 2 years ago (delay caused by being on Enbrel at the time).  She told me that the 5 year mark would be a good determining point as to which I had, and therefore what kind of progression I might see.  From that point forward the 10 year mark would be an even better indication.  
One of those comments that makes you understand why they call it a 'practice'.  lol