Hi,
Has anyone on here never used dmd’s or used them later on.
Did you keep getting relapses and lesions ??
Just wondered how your ms journey was ?
Thanks in advance for any answers x
Well, it took me 45 years to get a diagnosis, but back then there were no drugs so it wouldn’t have mattered anyway.
My MS has moved slowly. I’ve consistently had relapses roughly every 4 years, but I had no choice but to adapt to regular symptoms as they occurred. By 17, I had to stop hiking hills. By 20, I had to avoid hot sunlight. By 22, there were times when it was difficult to carry laundry up and down the steps, and I often had to sit a few minutes in between washing dishes.
It was just odds and ends of little things over the years, but I still raised a family, worked full time, and drove long distances. It wasn’t until 4 years ago that I hit a lengthy relapse so bad that it qualified me for permanent disability and enabled me to quit working. I still live alone and handle my own home. I voluntarily gave up driving, but I can still do it for short distances if I have to.
It’s possible that DMT’s might have made a difference, but I’m quite satisfied with the way things are now. I didn’t have the diagnosis hanging over my head, so I just muddled through life as best I could. Most of the time my life was quite normal; I just got tired more often than other people. I have occasional discomfort but very little pain, so I don’t use anything other than standard OTC drugs.
I support the newer DMT’s, but at the same time I’m wondering if they’re causing as many problems as they’re curing. It seems that the young people who are on them have so many more issues than I did at that stage, and so many older ones, who didn’t have drug options, are a lot like me. I think it’s a case of “we’re damned if we do and damned if we don’t”.
The trouble with taking them later on is that they do not undo damage already done. It’s like phoning the Prudential to ask to take out fire insurance when your house is already ablaze. Let’s face it: the only reason a person would take them later on would be because they were running into trouble of just the sort that DMDs cannot undo (i.e. trouble in the past or here and now) Best do all you can to dodge the trouble in the first place, I reckon.
Hi,
Alison100, im sorry but that wasn’t the case.
I was only asking for peoples ms journeys.
Thankyou x
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Hi, I was diagnosed in 2008, I was not offered any DMD until 2 years ago by then I had had 2 relapses which I was aware of. Don’t have a comparable MRI to compare scans with so don’t know when the lesions I do have happened (the Neurologist I have said I have ‘quite a few lesions’) but not to take DMDs because no active lesions or signs of it. So I also feel a bit damned if you do, damned if you don’t. I am 41, active and have two young kids. Do what you feel is right for you. No one knows what the future holds and unfortunately with MS no one can predict how it’s going to progress which with all the money being spent on it, you would think they’d be a step further.
Take care x
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