I'm on Beta. But my nero did tell me that should I decide not to take the shots, he wants me to know that he will be there for me just the same. Great guy!!!

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!

I am able to live a pretty normal life, I have been married for 34 yrs and have 4 kids. I walk a little gimpy but I am hanging in there. Thanks for asking boomer lady

Wow, dx in 1979, never used DMD's meds, and doing so well? You are very fortunate . . . and way to go!

Got any tips?

Cherie

I learned to always keep myself active-exercised-I used to jog a lot so when I couldn't run I walked when I couldn't walk so long I now use a treadmill. I rode bike a lot and when I could no longer ride bike I now ride a stationary bike. In other words when I lost something I just did it differently. I got to know what my body could and could not do. Try and make your body go as far as you can, take yoga classes helps with balance. I lift weights to keep my upper body strong. There have been times when I was stiffer than a board and by just keeping up movement it got better. Note do not overdo yourself just learn what your body can do and fight if your body rebels. The biggest thing for me was attitude-positive-I know there are a lot of things that I cannot do but oh there still are a lot of things I can still do (albeit kinda gimpy and odd. Hope it helps sorry for the sermon boomer lady

Hi Boomer,

I currently take no MS disease modifying drugs. I am RRMS, dxd. 12/01. I took Avonex for 2-1/2 years but it actually made me worse. I was in pain 24/7 and was very close to filing for SSDI thinking it was my MS.

After my experience with Avonex I decided I was taking a break from MS meds. That was 2004 and I have yet to regret my decision. I recently had an attack of ON, but thankfully it was mild. I actually had more exacerbations while on an MS med than off!

As to how my neuro reacted to me stopping the meds - he said that while he wanted to see me on some type of disease modifying drug, it was my body, my decision. Good answer!

I am still working full-time and am doing well all things considered. My worst symptom is fatigue.