Is there a progression timeline?

[getoutside]

Hi. I don't know if my question makes sense or not. I guess I read somewhere that, for some, MS can take a turn for the worse around year 10 or so. I know everyone is different but that comment has stuck with me.

My symptoms began almost 7 years ago. Once I started medication they were kept under control. Occasional fatigue was really my only issue. But now, I am noticing things. Cognitive issues mostly. It is very difficult at times for me to focus, come up with words, etc. I am also very emotional. I cry a bit everyday. Thought it was hormones but now I am not so sure. So now, what I read is really starting to concern me.

I would greatly appreciate anyone telling me their story about when, if when, things turned for you. Sorry, having trouble focusing now. When did possible disability begin? Best wishes everyone!

[TLC_31]

"MS can take a turn for the worse around year 10 or so."

I've seen that comment in passing, don't remember if it was from a real credible source or not. Why I don't let the comment bother me too much:

Year 10, is that 10 years after diagnosis or 10 years after the first noticed symptom that may or may not have been MS? My first MS symptom that I'm now fairly sure was MS (although neither I nor any doctors knew at the time) was in fall 1994. Was fatigue for years before that MS, or just the effects of college? It wasn't until late 2003 that I had an exacerbation serious enough that doctors looked at MS and diagnosed me in March 2004. Was that the 10-year phenomenon? Or am I on the brink of substantial progression here in the next year or so as I hit 10 years post-diagnosis?

To the latter, I suspect not. The reality is that the DMDs many of us use have only been around for 15 years, and I'm not convinced that enough long-term studies have been done incorporating that pool of MS patients, especially those of us fortunate enough to be able to stay on one DMD for the tenure of our treatment.

I certainly have bad days, and I know I will progress. Haven't had a relapse in about seven years, but I know another one could happen tomorrow. Although "MS can take a turn for the worse" I prefer to bet that I could also be fairly benign for a long time, and it will be the other effects of aging that get me!

[Jules A]

I wish there was a time line.

Anecdotally I have read many stories of people who did great for 10 or 20 years and then hit the crapper really fast.

This is the reason I continue to live in fear but also the reason I don't take one single day for granted when I am blessed to be well enough to walk to the bathroom and to go to work.

I hate this miserable disease.

[Seasha]

I would greatly appreciate anyone telling me their story about when, if when, things turned for you. Sorry, having trouble focusing now. When did possible disability begin? Best wishes everyone!

My story began in winter of 1988-89 with the first noticeable problem of vertigo and what I know suspect was ON and the MS hug. I was finally diagnosed in 1999 making that 10 years with no treatment as I was continually mis-diagnosed.

After dx, I did well, more or less, for the next 10-11? years on DMD's until I finally finally hit a wall. Stopped work, went on disability and never looked back. So it's safe to say I had a good 20-21? years (10 w/o meds)

This is just my story. Each of our courses of MS are different. I would try not to worry too much and just be present with what's in front of you now and enjoy what you have! Exercise to your ability, take your supplements, eat wholesome foods and try to keep away from stressful situations. (yea - right! )

I also live in WA. There are a lot of us out this way, aren't there? Take care now

[MSer102]

Everybody is different but looking at everybody as a group over a long time has shown that MS is almost always progressive. Before the DMDs started being used about half the people would reach the secondary progressive stage at about 10 to 15 years in.

The first DMDs have been used for about 20 years now and have slowed down the progression rate some but I don't know by how much. And the new numbers only apply to people who started on the DMDs early after they were diagnosed.

They're just numbers but they can be handy for people who like to compare themselves to everybody else. If you get to secondary progressive before 10 years you can say, "well I guess I didn't make it as long as most people." If you haven't gone to secondary progressive by 15 years you can say, "well i lasted longer than most people." I think it's just a guideline so people can make future plans and nobody gets caught completely by surprise .I think that's really all it means. My symptoms started about 15 years ago and I'm not secondary progressive yet so I guess I've lasted longer than most people. It could have gone the other way.

[knuckle]

A lot of it depends on gender and when you got your MS.

For some reason, despite the clear connection between MS progression and hormones, drug development treats everyone alike.

If you're male, get MS in young adulthood, it seems MS targets your spine and in about 10 years you start having walking issues.

If you're female, you may have more cognitive issues. Further, pregnancy/estrogen suppresses MS. After menopause, MS can accelerate.

For men later in life, when testosterone is declining, MS progression moderates.

So you've got this estrogen/testosterone hormone thing going on. Add to this the research of vitamin D, which generates Endorphins, which are hormones that serve to regulate the immune system.

Vitamin D supplements may slow MS progression and we already know that in regions of the world where people lack in vitamin D, unless it is provided in diet, you find higher rates of MS as well as other autoimmune diseases, like Psoriasis.

It's no coincidence then that the new Biogen BG12 drug is also used as a Psoriasis treatment and that BG12 works by moderating the immune system through increasing Endorphin production.

Low Dose Naltrexone (LDN), which I often post about, generates endorphins as well and many people with MS, Psoriasis, and other autoimmune diseases find success with, especially younger women.

[October22]

LDN

I've also read that 7-10 year line and it scared the heck outta me. My baby will only be 10-13 at that time! But there seem to be so many variables, how can anyone draw that conclusion? I'm taking to the live it one day at a time.

I'm intrigued with the LDN. Talked to the neuro about it today and she said she's only let one patient "talk her into it" and in the end, it didn't work. She didn't believe it did anything to stop progression, it was more for easing symptoms and that was iffy.
Research on the internet seems to say otherwise but it IS the internet...

Anyone?

[hunterd]

October, if you were only supposed to get 7 to 10 years somebody should have told a guy I used to work with. He has had MS since he was 18 or 19 ( he is now 46) and only has a slight limp to show for it.

[October22]

Thanks, Hunterd

I NEED to hear things like that. I understand why it's always the worst you hear about but I really wish people would share the good stories more!

[KyleW]

My MS first appeared 21 years ago. Then it went away. It reappeared almost 4 years ago. Then it went away until a year and a half ago. Since it last emerged in the summer of 2011 it has been well behaved through Tysabri.

The progression seems to be in terms of "minor" ongoing symptoms, like neuropathic foot pain, bladder hesitancy and early AM nystagmus related double vision. These symptoms, while constant, are responding well to medication.

So I think the 10 year time frame is coincidental. It doesn't seem to have been a factor in my case anyway

Kyle

[Jules A]

A lot of it depends on gender and when you got your MS.

For some reason, despite the clear connection between MS progression and hormones, drug development treats everyone alike.

If you're male, get MS in young adulthood, it seems MS targets your spine and in about 10 years you start having walking issues.

If you're female, you may have more cognitive issues. Further, pregnancy/estrogen suppresses MS. After menopause, MS can accelerate.

For men later in life, when testosterone is declining, MS progression moderates.

So you've got this estrogen/testosterone hormone thing going on. Add to this the research of vitamin D, which generates Endorphins, which are hormones that serve to regulate the immune system.

Vitamin D supplements may slow MS progression and we already know that in regions of the world where people lack in vitamin D, unless it is provided in diet, you find higher rates of MS as well as other autoimmune diseases, like Psoriasis.

It's no coincidence then that the new Biogen BG12 drug is also used as a Psoriasis treatment and that BG12 works by moderating the immune system through increasing Endorphin production.

Low Dose Naltrexone (LDN), which I often post about, generates endorphins as well and many people with MS, Psoriasis, and other autoimmune diseases find success with, especially younger women.

Hi Knuckle, some interesting thoughts. Mind sharing your sources?

[SNOOPY]

A lot of it depends on gender and when you got your MS.

If you're male, get MS in young adulthood, it seems MS targets your spine and in about 10 years you start having walking issues.

If you're female, you may have more cognitive issues. Further, pregnancy/estrogen suppresses MS. After menopause, MS can accelerate.

Hi knuckle,

I'm not sure where you are getting your information

I am female. MS, for me, has always affected the cervical spinal cord...from the begining. Pregnancy does not suppress MS, it is possible to have relapses during pregnancy as well as post-partum.

[onlyairfare]

I NEED to hear things like that. I understand why it's always the worst you hear about but I really wish people would share the good stories more!

Well you did ask when we became disabled, and if the 10 year mark is true!

I have had MS since 1975 and I am "not disabled" in that my disability score is less than 2. I work full-time, can do most things I want to do, and most of my MS problems are either invisible to others or treated with medication.

[October22]

Airfare - I would've asked, too

but it wasn't my question - I was just jumping in on the LDN part because I'm trying to find more info on it. I'd also heard the 7-10 years, though.
So nice to hear your story, too!!! Have you taken any of the DMDs?

Also, I'm a newbie -what's a disability score?

[Thinkimjob]

Hello. The comment about 10 good years was probably mine.
That's what the neurologist who diagnosed me after an MRI 14 years ago told me.

She was right, in my case. I know people need positive stories, and believe me, I was the same. Those were the early days of the Internet and I started Beta straight away and I read everything I could.

If your symptoms at diagnosis are sensory or ON that indicates a benign course etc... Good, good, good, I thought.

There was one site where the fellow said, "MS is benign until...". I was so sad, reading it, because I was desperate to believe/hope my MS would be benign and I'd be okay.

Afraid I was living a dream, because bang on 10 years later, my MS started to get bad, but it was a nice long dream.

(It doesn't mean what's happening to me now will happen to you.)

I do apologise if me telling my story frightens people, and I'm not trying to do a "Ask not for whom the bell tolls, it tolls for thee" thing.

I don't think the reality of MS progression when it happens should be swept under the proverbial, though. Even here, the SP/PP message board is buried away.

I'm not that bad all things considered.