To medicate or not?

[October22]

For the average RRMS patient they have roughly 10 years before starting to get into SPMS.

I've been wondering about this. I keep seeing the 10 year stat but is that 10 years from diagnosis or 10 years from your first major flare? What if you have an "Aha!" moment and realize you had minor symptoms years before? What about the people who wait years for a diagnosis? Are they just out of luck on early treatment?

Sorry to be naive but the 10 years has bugged me for awhile now...

Thanks in advance for any clarification on this!

[Tawanda]

Bugs me, too!

I've been wondering about this. I keep seeing the 10 year stat but is that 10 years from diagnosis or 10 years from your first major flare? What if you have an "Aha!" moment and realize you had minor symptoms years before? What about the people who wait years for a diagnosis? Are they just out of luck on early treatment?

Sorry to be naive but the 10 years has bugged me for awhile now...

Thanks in advance for any clarification on this!

This has always bugged me, too. I was diagnosed 10 years ago, and feel pretty much the same, rotten, but not really more rotten.

Perhaps I had MS 10 years before I was diagnosed, but so many MS symptoms can be explained away. It wasn't until my symptoms were screaming that MS was mentioned and an MRI performed.

Perhaps we are born with MS. Unless an MRI becomes a part of a typical annual physical, I don't think we are going to get any hard and fast answers about how long MS has been lurking around inside of us.

So this is officially year 10 for me, but I really think it is more like 20, but shhhhh....! I don't want a hopeless, yucky label slapped on me just because of some arbitrary number!

[pshrink]

Tawanda wrote:

PPMS is un-study-able, so nobody has any way of knowing FOR SURE if a DMT can't still be helpful.

Wrong! Totally wrong!
Either of the progressive stages of MS can be studied.
All it would take is a lot of dedication, a lot of time, a lot of people, and a lot of money.

Of course, since neither of the Progressives look like a big market for the drug companies, getting the money could be hard. So what else would be needed?

A battery of tests that could give a baseline for cognitive and neural function.
The same thing for movement/mobility.
And again for mental attitude.
Any good experimental psychologist could handle this.

But you also need lab space, a research team, a support infrastructure, and a whole load of experimental subjects. That means that you need something like a big-city University, with a good medical center.

The real killer would be the time involved. This could mean some 4-5 years to get any meaningful results - and that has an impact on publications, and in turn on tenure. So there is a potential problem in staffing such a study.

So, an academic with no worries about tenure, a good research team, and a big pot of money could seriously research PPMS or SPMS or both. Don't tell me that it cannot be done - only that no-one wants to do it.

G

[October22]

I won't tell, Tawanda!

[KatieAgain]

I've been wondering about this. I keep seeing the 10 year stat but is that 10 years from diagnosis or 10 years from your first major flare? What if you have an "Aha!" moment and realize you had minor symptoms years before? What about the people who wait years for a diagnosis? Are they just out of luck on early treatment?

Sorry to be naive but the 10 years has bugged me for awhile now...

Thanks in advance for any clarification on this!

I think the old version stated that approximately 50% of people with RRMS will move on to SPMS after 10 years.

The new version from the NMSS states "The transition to SPMS generally occurs in people that have been living with RRMS for at least 10 years."

Not sure if there is a statistic out out there or not.

Do I think DMDs have slowed down the transition, yes I do. So I will continue to try and take them as long as the benefits outweigh the side-effects.

[Marco]

Tawanda you may find this interesting:

In a new study, researchers found that antibodies (a blood biomarker) against a potassium channel protein called KIR4.1 appeared years before clinical onset of multiple sclerosis (MS).

http://www.medicalnewstoday.com/articles/273121.php

[Tawanda]

Tawanda wrote:


Wrong! Totally wrong!
Either of the progressive stages of MS can be studied.
All it would take is a lot of dedication, a lot of time, a lot of people, and a lot of money.

Of course, since neither of the Progressives look like a big market for the drug companies, getting the money could be hard. So what else would be needed?

A battery of tests that could give a baseline for cognitive and neural function.
The same thing for movement/mobility.
And again for mental attitude.
Any good experimental psychologist could handle this.

But you also need lab space, a research team, a support infrastructure, and a whole load of experimental subjects. That means that you need something like a big-city University, with a good medical center.

The real killer would be the time involved. This could mean some 4-5 years to get any meaningful results - and that has an impact on publications, and in turn on tenure. So there is a potential problem in staffing such a study.

So, an academic with no worries about tenure, a good research team, and a big pot of money could seriously research PPMS or SPMS or both. Don't tell me that it cannot be done - only that no-one wants to do it.

G

I don't think we disagree. You just articulated why it is un-study-able. No $ in it. That's also why vitamins rank so low on the "what we are going to study" lists the pharmas generate! Treatments on the cheap are never going to be the next big thing in corporate America.

[Tawanda]

Tawanda you may find this interesting:

In a new study, researchers found that antibodies (a blood biomarker) against a potassium channel protein called KIR4.1 appeared years before clinical onset of multiple sclerosis (MS).

http://www.medicalnewstoday.com/articles/273121.php

Hi Marco!
I got wind of this through my WebMD MS newsletter. To be honest, it really freaks me out. I guess many diseases have gone this route: Better, quicker diagnoses and no cure in site!

The first thing that came to my mind was our kids. Would we want them tested? Would we want to know? Would they want to know?

My stepmother immediately applied for supplemental medical insurance once her father got Parkinson's disease. Our kids might get a blood test and do the same if the insurance companies don't require their own blood test first...

[misslux]

I would have wanted to know years before. Coming from a family and personal history with no medical issues, I didn't even think of financially preparing for times when I would no longer be 100% well.

[BigA]

I've been wondering about this. I keep seeing the 10 year stat but is that 10 years from diagnosis or 10 years from your first major flare? What if you have an "Aha!" moment and realize you had minor symptoms years before? What about the people who wait years for a diagnosis? Are they just out of luck on early treatment?

Sorry to be naive but the 10 years has bugged me for awhile now...

Thanks in advance for any clarification on this!

Everyone please bear in mind that these are averages and they're old averages. Look up average income in your zip code from 10 years ago and see if you are any wealthier than you were before you looked it up.

The 10 year rule does not apply to anyone as an individual. It means on average. Some will be at 5 years and some at 15. You are where you are, independently of statistics.

My doctor told me she was sure I didn't have MS because I was a man. Statistically, it was much less likely, but in this case, my MS wasn't interested in what the math says.

[Marco]

A different way to state the RRMS to SPMS statistic might be,
"Within 20 years of onset, half of RRMS patients will move into the SPMS category. Of those patients that move into the SPMS category 50% will transition within the first 10 years."


I believe the math works out like this:

For 100 MS patients
85% of newly diagnosed MS patients will be diagnosed with RRMS or (85 out of 100 patients).
In 20 years, 50% of those 85 (or 42.5 patients) will move to SPMS.
In 10 years, falf of the 42.5 (21.25 patients) will move to SPMS.


For 100 RRMS patients
100 new patients are diagnosed with RRMS.
In 20 years, 50 patients will have SPMS.
In 10 years, 25 patients will have SPMS.


I completely agree with BigA about these just being statistics. Men diagnosed with MS closer to 40 are more likely to hit SPMS than a woman diagnosed in her 20s. Then you have to throw in treatments, flare ups, etc. I just try to do the best that I can for today and leave tomorrow to tomorrow. Sorry this got sidetracked so much.