Leave it to me to wonder about DMD's

[Blessings2You]

Every once in a while, on this board and a couple of others, I hear about someone whose diagnosis of MS was rescinded and/or changed after months or years of treatment with DMD's (Disease Modifying Drugs).

I am wondering what effect the MS drugs would have on someone who DIDN'T have MS? Hmmm.

[SallyC]

I don't know B2y, but let's hope it means that if you never had MS, that after taking one of the DMDs for awhile, you'll never get it.

[Lynn]

Hmmm....eight years Beta, three and a half years Tysabri.... I am still in denial and waiting for my doctor to tell me it is all a sick joke. Effects??? I will let you know

Seriously though, I had a girlfriend who was 're-diagnosed' and no longer had MS after ten years. Luckily, she never went on any of the DMD's.

Lyn

[KittyLady]

I actually had a neuro, years ago, tell me that someone who doesnt have MS and takes the dmd's would get very sick. Liver damage, heart disease, etc. Not sure how accurate it is for just those without MS, as I recall when I was on beta 10yrs ago, there was always a concern about my liver. I was getting liver function tests every 3 months. I think there is always a risk with each and every one of these dmd's. Its such a very personal choice to take a dmd or not to take a dmd.

[Jules A]

Originally Posted by KittyLady

I actually had a neuro, years ago, tell me that someone who doesnt have MS and takes the dmd's would get very sick. Liver damage, heart disease, etc..

I'd have to disagree with your neuro and thankfully mine said it wouldn't have any additional side effects other than whatever might occur in me whether or not I have MS. So in my understanding if you are someone whose liver enzymes will get wonky from being on a DMD that would happen MS or not. I wouldn't let the off chance that we might have been misdiagnosed sway me from starting a dmd. I don't think there are very high numbers of people being misdiagnosed. I'd be happy to put away the Copaxone after all these years if it was all a mistake but I'm not that lucky.

I haven't ever heard this and can't think of any research that would indicate these medications might cause problems in someone without MS. In fact they aren't even all that effective in targeting MS!

[SallyC]

The only one I can remember is the woman who died of PML, after taking Tysabri, and then was found not to have had MS. I think her husband sued everybody..