What's happening?
Posted: Fri Sep 24, 2004 7:36 am
When I was diagnosed in the spring my neuro said three things at the outset:
- there's no cure
- it will get worse with time
- you've got it for life
How long will he be able to keep repeating this to new patients?
This website has been invaluable in providing me with up to date information on different theories / treatments relating to MS but I'm left wondering why a group of, I imagine, mostly MS sufferers is seeking to get decent answers and challenge the entrenched views of the medical establishment. Why aren't scientists / reseachers / neurologists (who we are paying through taxes, charitable donations and purchases of drugs) coming up with the answers?
Many MS websites talk about the uncertainty with MS, but I'm also finding the certainty a problem as well - every day I wake up with a disease / ill / stiff / moody / tired etc. Everyday there is no major breakthrough on the causes / cure.
What do I want? I want something to change quickly - the cause/s to be identified and a cure to be dished out (but not daily injections for the rest of our lives). How can this change come about - I'm not sure, but 10,000 people took to the streets of London recently to protest about a possible foxhunting ban. Writing letters to MPs / Health Departments might raise the profile a little. What about more radical suggestions - boycotting all the current disease modifying drugs? (which appear to have limited modifying effect). We would suffer, a bit, but it might force the companies to invest in different approaches (or maybe not).
Sorry for the rant - does anyone else agree with me and feel as frustrated as I do? In a year's time, I don't want to read about another theory for the cause or another wonder drug coming onto the market (parrot poo, tortoise tongues etc). Surely, by the end of this year, our knowledge of the disease must be better then the previous year (given the various reasearch going on) but it never feels like it. Why is this?
- there's no cure
- it will get worse with time
- you've got it for life
How long will he be able to keep repeating this to new patients?
This website has been invaluable in providing me with up to date information on different theories / treatments relating to MS but I'm left wondering why a group of, I imagine, mostly MS sufferers is seeking to get decent answers and challenge the entrenched views of the medical establishment. Why aren't scientists / reseachers / neurologists (who we are paying through taxes, charitable donations and purchases of drugs) coming up with the answers?
Many MS websites talk about the uncertainty with MS, but I'm also finding the certainty a problem as well - every day I wake up with a disease / ill / stiff / moody / tired etc. Everyday there is no major breakthrough on the causes / cure.
What do I want? I want something to change quickly - the cause/s to be identified and a cure to be dished out (but not daily injections for the rest of our lives). How can this change come about - I'm not sure, but 10,000 people took to the streets of London recently to protest about a possible foxhunting ban. Writing letters to MPs / Health Departments might raise the profile a little. What about more radical suggestions - boycotting all the current disease modifying drugs? (which appear to have limited modifying effect). We would suffer, a bit, but it might force the companies to invest in different approaches (or maybe not).
Sorry for the rant - does anyone else agree with me and feel as frustrated as I do? In a year's time, I don't want to read about another theory for the cause or another wonder drug coming onto the market (parrot poo, tortoise tongues etc). Surely, by the end of this year, our knowledge of the disease must be better then the previous year (given the various reasearch going on) but it never feels like it. Why is this?