hi, Julie.

the doc didn't say much to me when I stopped taking Copaxone three years ago.

I told him, and he's all, "Okay."

probably because the neuro I'd had for a decade (that I adored) had just retired, and the new one, well, we only had one appointment, and he wasn't really paying attention.

the Copaxone people called a twice, and then never again.

sorta like, do what you want, no big deal...

I've had MS for 20 years, and am SPMS...

Yep.
Went from not taking an aprin for the even the worse hangover to all kinds of pills, and vitamins and shots when I was dx in '03. Tried Rebif, didn't like it. Now on Avonex and ADs and anti-anxiety meds.

When I was first diagnosed the fatigue was killing me. For some reason now, I don't need the Provigil as much as I did back then.

But that's just me...

My Neuro - the same that diagnosed me in 74 said a couple of years ago that the Northeast was the last area of the country where people had a choice if they wanted to take a CRAB or not - in the rest of the country the doctors assumed that the patients would go along with their suggestions -

But it's up to each of us - I went for 34 years without taking anything other then ACTH in the early days and was doing pretty well - then in 06 my mother died - not that it wasn't expected as she was 95 - on the day of her service I started going numb from the waist down and my walking has been steadily deteroriating since then - my conclusion - none of us know - as we all know - what MS has in store in the next hour - the next day - the next month - the next year -

It wasn't an easy decision - after all who really wants to be sticking themselves with a needle every day or so and in reality who really knows if these meds work - especially on those of us who have had MS for some time - but I decided I would rather be as prepared as possible - thus the decision to start Copaxone at the ripe old age of 63 -

I think things might be different in Canada, or at least where I come from. I have had 3 different neuro's along the way, and only the last one tried to convince me into at least going through the CRAB presentations.

Canada has the highest known prevalence of MS in the world, and many of the trials (for the CRABs and other drugs) and are done right here in our research centers. Our neurologists and specialists are very aware of the pros and cons to such treatments, and because the efficacy is of them is really not that favorable, they let us chose for ourselves. They are quite willing to admit openly about their ineffectiveness too.

Our specialists are also not permitted kick-backs or favors from pharma industry. I think this tactic is also particularly persuasive/influencial in the US.

Cherie

I'm not disputing what you say Cherie, but I live in a tiny island state of Australia, and I've always been led to believe (from literature) that Tasmania has the highest incidence of MS per capita in the world. Something like 70% of Australian incidents for a start...........

It would be interesting to check out statistics for both our areas seeing we both live in cool climates......the cooler climates being one of the linking factors I believe.

GJ or anyone else who knows....how does Alaska fare in the statistics of MS per capita, being a colder state? Just curious!

Not by a long shot, Koala.

Tasmania has a prevalence of 70-something per 100,000, and Alberta has a prevalence of 300-something per 100,000.

Australia has a low prevalence overall, it's just that Tasmania is higher then most other places.

http://www.direct-ms.org/booklets/Al...sadvantage.pdf

Cherie

Thanks for that Cherie. No offence meant. I guess our information here is probably predjuced to the Australian figures.

300 per capita sure is a lot of MSers. Maybe I wasn't adjusting the data as well as it was meant to be adjusted, but I thank you for taking the time to reply to me.

It would be interesting to see data from some of the ther cooler areas as well.

Sorry to take this OT for a second . . . but to answer your question Koala, here's a prevalence map for the world:

http://i12.photobucket.com/albums/a2...s_worldmap.jpg

Unfortunately there are lots of "probables" (guesses, really) because most countries don't keep adequate stats (including the US and Canada).

I think "high risk" is defined as over 50/100,000, so that map doesn't show EXTREMES, like 200+ either.

Cherie

Wow! That map sure is impressive. At least I didn't get it all wrong! :D

Thanks for going to that much trouble Cherie. It's good to learn new things, even if it knocked the ladder out from under my feet..:)


P.S. MSers......Did you all see little Tasmania (the heart shaped island state in red) at the very bottom of Australia on that map?? That's where I live!


Addit: I wonder why Alaska is not highlighted in red when that state is colder than the more MS prevalent states. Any one know why?

Edit: Sorry for going off subject peoples but this is interesting!

Well . . . it's kinda a long story. :D

If you look closely at the legend, there are categories for:

- "probable" high risk
- "probable" low risk
- "other" risk

Now if you look at the map, you'll see MOST countries fall in those three UNKNOWN categories . . . but if you took those colors away, the map wouldn't tell much of a story. This map appears colored to supporting the North-South Gradient Risk theory.

Also notable is that Canada, most of the US, Tasmania and NZ do not appear different from each other, but we know that places like Alberta are much much higher then say, the US south, or even Tasmania (which is also red).

This is a generalized/averaged map that is meant to "paint" a picture. The stats aren't wrong, per se', but they are blended to make a specific point.

No one seems to know what "other" risk means, or why it is that the coldest, darkest, least UV/sun-rayed places (like Alaska) do not have a high risk. They would probably "guess" that it is a variance in genetics (i.e. people in these lower prevalence areas just aren't as "susceptible" to MS), but under interrogation, this argument doesn't hold water either, IMHO.

Some researchers think it is a virus or bacteria, and that does seem to explain why there are "clusters" and "hot spots".

Like I said though . . . it's a long story. :D

Cherie