3 ms·

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

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...
    - Broken_Hippo 6y ago
      You are correct! Not as many males get it. 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.
- neltnerb 6y ago
  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.
Broken_Hippo 6y ago
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.
- neltnerb 6y ago
  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.

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...
  - Broken_Hippo 6y ago
    You are correct! Not as many males get it. 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.
neltnerb 6y ago
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.

Broken_Hippo 6y ago

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.

neltnerb 6y ago
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.