This Is MS Multiple Sclerosis Knowledge & Support Community

I was clinically diagnosed with MS in January 2007.
However, for the past few years it was considered "possible MS".

I've had random symptoms for years, ever since i can remember - but never would I have thought it was MS because I did not know anything about it.

So now I have it - and am being treated with various medications - AVONEX specifically for MS.

What I really want to know is - for those of you who were diagnosed in their 20's (I'm 26)...how has it been since? for instance, I meet a lot of people who are in their 40's and are using some type of mobility assistance. But when they were in their 20's were they ok?
Just wondering what my future has in store for me. And your stories would be greatly appreciated.

Thank You for Your Time!!
Corinne

Corinne,

The truth is nobody can really predict what kind future MS has in store for you. Every patient is different and every patient reacts differently to the various medications that are available. There are stats that the docs can quote to you to give you an idea of what MIGHT happen.

My wife was diagnosed with MS at the ripe old age of 21, just as she was out of nursing school. Her symptoms at the time went away after a couple of months and she lived the next 20 years, relatively symptom free. She didn't take anything for her MS (there wasn't anything to take back then) and she spend those 20 years a very active person in both sports and her profession.

Then, one morning early in 1991, her foot started to tingle a bit and by 1996 she had to quit work due to the fatigue and difficulty in walking. Her MS progressed to SPMS and after falling and breaking her leg in 2001, she has been confined to a wheel-chair.

So you just don't know what is going to happen and when. The best thing to do now is live as healthy as you can, eat properly, get plenty of rest and enjoy life as much as you can.

Harry

Rinn wrote:What I really want to know is - for those of you who were diagnosed in their 20's (I'm 26)...how has it been since? for instance, I meet a lot of people who are in their 40's and are using some type of mobility assistance. But when they were in their 20's were they ok?
Just wondering what my future has in store for me. And your stories would be greatly appreciated.

I think with some of the treatments in Phase III (see Dignan's list), the "story" of someone with MS in ten years will be VERY different to the past ten years.

I totally agree with COB on this.

gwa

Hi Rinn

I definitely agree with COB and gwa that in 10 years the story of MS will be very different. I tend to pin my optimism on emerging neuroprotective agents. Some are already in trial.

Taking a slightly different approach responding to your query, there is some research suggesting a link between disability and age.Natural history of multiple sclerosis: risk factors and prognostic indicators

Recent works suggest that the progressive phase in multiple sclerosis could be an age-dependent, degenerative process, independent of previous relapses, and that the initial course of the disease does not substantially influence age at disability milestones.

SUMMARY: Overall course and prognosis in multiple sclerosis is most likely to be related to age and the occurrence of the progressive phase of the disease, rather than to relapses or other clinical parameters. Individual prognosis remains hazardous.

Age at disability milestones in multiple sclerosis

For the 1844 patients, median ages at time of assignment of irreversible disability were

44.3 years.....for a score of DSS 4, (note--per abstract limited walking without aid)

54.7 years....for DSS 6

63.1 years...for DSS 7 (note--per abstract wheel chair bound).

These results were essentially similar whether the initial course of multiple sclerosis was exacerbating-remitting or progressive, and whatever the initial symptomatology. Females reached disability milestones at an older age than males.

Interesting that it almost seems like it's somewhat consistent with the people you've met.

Take care--I do think there's reason for optimism.

Sharon

Gosh, this is FUN being able to agree with so many people about something so important!

If your MS course proves average, your future likely isn't as grim as you suspect.

WELCOME to thisisms!

Bob

Hello Corinne,
Even though I'm sure this is a community you would rather never have joined, you're very welcome!
As the others have pointed out, the word which is most commonly used to describe MS is, " unpredictable". Lots of attempts have been made to categorise and predict the future progression of the illness using different techniques, but with little success so far.
No doubt you have already discovered that there is an avalanche of information available which is downright confusing and contradictory: in part because there are conflicting opinions about the nature of MS; partly because the sheer volume of new research seems to prove and then disprove whatever is the currently held opinion. Combine that with the fact that everyone, including doctors, tends to have their own favourite theory and you have the perfect recipe for an endless debate – on this website and among the medical community in general.
If you choose to see this constant flow of ideas, discoveries and breakthroughs as positive I'm sure you will feel great hope for the future, and rightly so.

It's perfectly natural to look at the people around you with MS and think that they represent your future: that simply isn't the case just as knowing someone who's won the lottery has no effect on your chances next week.

It wouldn't be fair to be blandly optimistic about the future of your MS, but realistically, the majority of sufferers never need to use a wheelchair and most rarely use walking aids. If no research was done at all you have a good chance of staying on the moderate side of disability, but with everything that is going on around the world, that chance is increasing day by day,