What you said about life expectancy is not that clear, so I will clarify: average life expectancy for MS sufferers is 5-10 years shorter than the norm, but this gap continues to narrow.
Oh. I was about to say, my doctor said median was wheelchair in ten years, not dead. The severity varies tremendously, I (as sometime with MS) can totally see people with recent major episodes trading. They might not get another MS attack for years.
Must have been a pretty bad side effect though, my first treatment literally resulted in me needing surgery. If that was better than nothing... I'm just going to guess the side effects are very serious. Most other approved MS drugs have some nasty side effects or another already, the bar must be somewhat high given what it's treating.
That's not the average now, though - especially not for someone taking medication. If folks ever even need a wheelchair, that is often temporary. It is so much more common to use other walking aids, if you need them at all. And this is still factoring in folks that aren't taking medications and are older and couldn't start on treatments early. This is all changing: People are getting diagnosed earlier than they were previously and started on modern treatments early on, which not only tend to reduce flares (in folks with Relapsing-remitting forms, the most common type) but they make flares less severe. All of this means as treatments get better and younger folks make up more of the statistics, the disability chances should still go down.
OF course, there are some folks that do better or worse. I have very few day-to-day symptoms and those are mild: I'm 42. Some folks get in pretty bad shape in their 20s.
As far as side effects: Some have a much higher chance of death. When that gets to high, they deem it unsatisfactory. I wouldn't be surprised if this was instead of or including a chance of being even more disabled or damaging heart/lungs or something else that shortens life.
I am male, which accelerates the progression. But that was what my doctor told me in 2012 for men, even if taking interferon (which I did). And the two big new ones since. I stayed basically great until 2017. But now both hands are mostly numb and my leg is numb. I've taken the best medication available at every opportunity. Now it's progressive. I'm 37 and was diagnosed and treated very early after just one mild attack.
Anecdotes. I know. Although my progression so far has been fairly in line with my first doctor's statistics.
Unfortunately, men are so much more likely to wind up with a progressive form of the disease. I'm really sorry to hear that it has 'leveled up' like this. This is one of those fears in the back of my head, though with women it becomes more likely after menopause. I truly hope it doesn't get you down too much anymore and that you are able to find some enjoyment in life despite all this.
I am lucky, mostly: I'm 42 and have a bit of fingertip numbness and get some electric shocks sometimes. I wasn't diagnosed until around 2 years ago, though I had ON in my 20's.
It is somewhat odd, though: My neuro first tried to put my fears to rest, assuring me that it wasn't the same disease as it was even 5 years ago due to the drugs available. I wish more of them worked on progressive forms as well, and I'm still hoping for some miracle - it doesn't have to be a cure, per se, but something that at least heals more often.
My doctor may have been blunt with me because I grew up with family that has it. I've known what it was since I was 5.
But my doctor says the same lately, not even dimethyl fumerate was out there yet in 2012 and the best drugs merely reduced the probability of an attack by a little under 50%. Several current drugs I think are more like 70% and way gentler to take. Still far from perfect though, I've gotten worse despite three very different medications. But with MS we're kind of just playing the odds, and that 70% is aggregated across all underlying causes. Mine is almost certainly genetic. Maybe one drug works great for genetic causes but badly for some say chemical exposure that triggered it. But no one can tell that's the case.
That seems like something that could be improved for sure, personalized medicine. But I also don't find it hard to believe that we'll be regenerating nerves in ten years, that seems entirely reasonable given how long we've been studying them and the tools now available.
Stress has never been proven to be a link, though it is often repeated. Being male does sometimes make things worse and males are more likely to have a more progressive form of the disease than females. (The vast majority of patients are females: I know they suspect an interplay of hormones creating different outcomes, but I don't know if they've proven it).
As far as progression, that is something that happens to some people. Some folks never have the relaspses and time in between and others, the disease turns into progressive form. If scientists haven't figured out why some are more progressive or why some folks' MS turns progressive, I highly doubt looking at one's own life is going to find a key to progression. I'm not the parent here, but I can't see the point in such a thing.
Oh, I thought the statistics were that half as many men as women have it. I don't know if I'd call that vast, though admittedly most people who have mentioned that they have it have been women. I probably just saw bad stats.
Like, yes, my life has been very stressful for years at a time. Those times weren't when it became progressive though, and good luck finding a control that has never had periods of stress and then doing statistics on them somehow...
I was more pointing out that males, when they get it, are more likely to have a hard time and more likely to get primary forms and the relapsing forms are more likely to turn progressive early on (women wind up catching up after menopause sometimes).
And yeah, everyone has stress. They thought that stress caused relapses at one time, though, but further research has ruled it out. They can look at folks that have had undue stress and look at timing of relapses vs times of major stress to see if the link is correct. The 'stress-free life' advice still gets passed around though.
I am not even sure if major things are improved by my medication because I have no idea whether it would be even worse without. I can't do statistics on that... I definitely can't guess whether it becoming progressive is because I've had a lot of stress and wouldn't want to mislead anyone by suggesting it. As far as I know it just tends to happen eventually.
Stress seems to trigger attacks and symptoms though, I don't think that part is controversial.
