[boomer lady]

I do not take any MS is there anybody else? If you don't would you tell me how you are doing? DX in 1979

[BaxterTheBunny]

Are you asking about the ABC meds specifically for the MS or also about meds for the symptoms?

I was on Avonex for 4 years but went off it b/c it lowered my WBC too low and left me sick w/ colds/flu all winter long.

I do take different meds for symptoms such as the Neurontin for the nerve pain, etc.

[Snoopy]

Hello, boomer lady.

Well, you have been diagnosed longer than me but like you I have never used the Disease Modifying Drugs (DMDs) but then again there weren't any when we we dx'd

How I'm doing - pretty darn good and my neuro agrees. I do have some symptoms but except for my current pelvic pain/pressure symptom which makes me want to scream I have learned to deal.

I was dx'd in 1986, symptoms since childhood and I am 46.

The real question - How are you doing?

[lady_express_44]

I've had MS since 1991, at least, and haven't used any DMD's or steroids. That wasn't because of good (or bad) planning though, it was just the recommendation of my neuro(s) based on being mostly spinal lesion afflicted, AND because drugs and I don't get along at all.

I have been on LDN since early 2005, and it has helped. I am still RRMS, and relapsing occasionally, but my EDSS reduced after starting on that drug, and has remained constant since then.

There are good times and bad.

Cherie

[Catch]

I opted for the DMDs, Copaxone is currently my only option due to other conditions. I decided to medicate for a few reasons: First, because of how quickly symptoms came on as soon as I was dx'd. Second, how I could have been undiagnosed since 1970s. Third, research has shown that brains of those with MS show atrophy, which is decreased with the use of DMDs. I don't want to mess with my brain. I feel extremely lucky to have access to some excellent expert care and my doctors all recommend DMD, as well.

But, with everything, its up to you. I suffer no serious side effects from the copaxone, and luckily my insurance (thus far) pays most of the costs.

[KarenMarie]

Have had MS since 1974 - started Copaxone last Friday - had an problem in April 06 and walking has been going steadily downhill - neuro thought it couldn't hurt to try to stave off anything coming my way -

[Koala77]

Originally Posted by Snoopy

...........like you I have never used the Disease Modifying Drugs (DMDs) but then again there weren't any when we we dx'd .......

I was diagnosed in 1977 and am not on any DMDs either. I'm doing OK having just recently retired frrom the work force. I use a cane for stability because of frequent falls but other than that, am very mobile.

[momXseven]

? for those that don't do DMD's, doesn't your neuro get upset that you don't want to do treatment? I mean it's different if your turning down a pain med but when it comes to something that might help you slow down the rate at which the MS get worst.

Not trying to start anything, I just want to know how a Dr. is with someone not doing DMD's.

[Snoopy]

Originally Posted by momXseven

? for those that don't do DMD's, doesn't your neuro get upset that you don't want to do treatment? I mean it's different if your turning down a pain med but when it comes to something that might help you slow down the rate at which the MS get worst.

Not trying to start anything, I just want to know how a Dr. is with someone not doing DMD's.

When Betaseron became available I had been in the lottery but as my number was close to coming up my neuro and I decided to wait since it was the first drug of it's kind and there were alot of unknowns. Through the years my neuro would just tell me if I ever changed my mind about a DMD to let him know.

My current neuro does not want me on the DMDs - since there is no way to know how I have managed as well as I have all these years there is a concern the DMDs could possibly cause problems rather than help.

[snoodles]

Mom - that is an interesting question - one I was pondering - also...

At my last visit with my Neuro - she said that she needs to get a firm dx if indeed I do have MS because she believes in treating "aggressively".

What I didn't tell her is - I don't plan to take DMDs... I also have very bad reactions to drugs and I just don't know if I am ready to take that next step - when / if I ever get a dx. I think my Neuro will be very unhappy with me but I also think she would respect my decision.