4 ms·

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

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.

neltnerb 6y ago
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.
- Broken_Hippo 6y ago
  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.
  - neltnerb 6y ago
    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.
    - faeyanpiraat 6y ago
      Did you happen to be under a lot of stress for long period of times? Did you find any (even anecdotal) correlation between some cause and the result of your disease transforming into progressive?
      - Broken_Hippo 6y ago
        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.
        neltnerb 6y ago
        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...

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.

neltnerb 6y ago

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.

Broken_Hippo 6y ago
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.
- neltnerb 6y ago
  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.
  - faeyanpiraat 6y ago
    Did you happen to be under a lot of stress for long period of times? Did you find any (even anecdotal) correlation between some cause and the result of your disease transforming into progressive?
    - Broken_Hippo 6y ago
      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.
      - neltnerb 6y ago
        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...