I read where within about 10 years, approx. 50% of those who are diagnosed with RRMS transition to SPMS, which is characterized by a steady (but not necessarily rapid) progression of disability without any remissions. These folks generally have fewer or no relapses as time goes on.

Not sure, but I think about it alot. Makes me wonder how much time I have left to do things.

hi I'm kind of curious what kind of symptoms you had at 13. it must have been frightening to be so young and have MS diagnosed. I never went into remission after being dxed at 42 now 50. Still walking if you could call it that. Had the eye problem at around 27 but nothing about MS was ever mentioned. They gave me glasses instead. Even though I was 20/20, still am. Eyes get blurry easy and tire easy though.

oh and I only wore the glasses for about 6 months did'nt really need them

I don't know. But I don't get the whole RR thing. That's what I am but I never seem to ever remit.

I was 1st diagnosed at age 30 (severe optic neuritis, facial number, etc.), then only minor symptoms until 15 years ago. Then started occasional dysphlasia and minor facial numbness. Now at age 64 in only 3 months I've had big visual aura, 1st MRI (found 30 brain lesions), worse facial numbness, bad dysphlasia, and today my 1st MS hug (scarey and very painful).

I won't take the meds my doctor wants me to take at this point. Hopefully it will stay at this easily tolerated level until I die of other causes. For years varoius docs said original diagnosis must have been wrong, because I went so many years without a serious progression - I guess the 30 brain lesions proved that theory isn't always true.

We refer to doctors "practicing" medicine, because it's not a perfect science.

My first symptom was numbness up to my waist- not complete. I had an MRI and was diagnosed within a month. A year later same symptom. A year later optic neuritis in one eye. Off and on I have had muscle weakness and the pins and needles, some leg spasms- just when I'm trying to sleep- and then last year some throat muscle weaknes on one side. Stll, nothing I can't work around.

AKDenise, Yes, I"m hoping to die of old age too. I had one neuro wonder about diagnosis as well. The MRIs have shown progression. But lesions have some and gone too so you never know how much stock to put in the MRIs. I'm just wondering if there is anyone who has had 'benign' MS their entire disease course, or if that is not possible.

I have had MS symptoms for more than 20 years. I was diagnosed with RRMS 17 years ago. I still have RR, but fortunately my last relapse was 4 years ago. Before that time, I had relapses about every 2-3 years. I still have some relatively minor residual symptoms, but no new symptoms or worsening of old symtoms. I currently take no medications, but took Copaxone for a couple years (about ten years ago) and took steroids twice to get me through really difficult relapses. I am currently taking natural, healthy measures to stay well.

I asked my neuro a similar type question years ago about disability to which the response was that he had patients who are quadriplegic and on a ventilator on their first attack and patients w/ MS for > 20 years who are running marathons.

The bottom line - that is scary and frustrating - is that this disease is very individualistic. There is no way to predict if you will convert to secondary progressive from RRMS or not. I think your neuro was trying hard to answer your question directly, but in my mind it is really sad that he/she could not have qualified the response w/ the fact that no one can predict the course of this disease.

I do not think that anyone knows. For me it took decades. But everyone is different is what I was always told.

I went for 16 years between symptoms (except for the irritating stopped up plumbing problems). I exercised regularly, so I am so sold on exercise.

Try to be optimistic and try to take the best care of yourself as you possibly can. Eat well and exercise (if possible). And take your vitamins (lol). I believe that the interferon keeps the progression down for me.

Neuro said he'll see me in 4 months, so I won't have to decide until then, though I already told him I don't want to take anything that's available now. I had a little flare that went away, so definitely still RR. But he did say that with progressive you just get all your old symptoms back. I know I could live with all them, at once. So I'm feeling like not going on anything. It is reassuring to know that not every case is a worst case scenario, which, after seeing my aunt who died at 27, I figured I was in for.

MS really is fascinating in how it is manifested differently in each individual. I don't particularly like being on the guinea pig side, but it really is an intriguing puzzle. Just wish they'd figure it out.

Everyone is different, I'm sure I had MS long before I was diagnosed in 1994 then told it was RR ... Then in 2009 was told its now SPMS ..... so anyone's guess....
At a Guess fa me it was 25 years but with the issues I had as a Kid and as Teenager could have been a lot Longer...

I get the MSQR (MS Quarterly Report) and in their latest Fall 2010 edition, their official stance is that the time from RR to SPMS was 21.4 years with some gender differences.

Their magazine is free for people with MS and has all the latest clinical trials and has a database of about 35,000 people. I find a lot about the latest on data re MS and clinical trials and what is coming down the pike.

I was diagnosed 19 1/2 years ago (I was 20). At first I did Betaseron then now on Tysabri. I really never had anything going on until a couple of years ago. Everything was treatable except my stiffness.

But 1 Week ago my legs started giving out. Scariest thing I am going through right now. I hsve told my neuro that I am not giving up so figure something out. She wants me to try ACTHAR--get this it is $29,000. No joke either.

I told her I want to do the chemo. She says well I don't want you to end up with leukemia down the road. I told her I am living the present and I want a stop sign. If I get cancer in 10 years than so be it but why do I have to suffer for the unknown?

I wish you luck and research as much as you can.

you should also keep in mind that Tysabri has no cases of PML reported in the first 2 years. If you are waiting around to see if something better comes along then starting Tysabri for 2 years isn't a bad idea. a whole lot can change in 2 years.