Hi again,
(Sorry, long!)
I honestly think you need to talk it over with your neuro. He cannot think your disease was too aggressive, or he would not have been content to leave things, and see how they go.
They may not like discussing what they personally would do, but a good way to find out what they really think of your case is to ask: “What would you do if it was you/a member of your family?”
I think, sometimes, they are too wary of seeming to interfere, but sometimes a patient (like you or me) wants direction!
I’m sure I’d have found the whole decision a lot less nerve-wracking if my neuro had said at the outset: “Well, in your position, I’d leave it, but it’s completely up to you!”
But I guess he thought it was unethical to say anything that could be seen as swaying me from a drug I was perfectly entitled to. So he only revealed what he’d have done after I’d already said I didn’t want them. If, on the other hand, I’d asked outright: “Doctor, what would you do?”, it presumably wouldn’t have been a problem, because it can’t really be “undue influence” if the patient says: “I want to know what you’d do.”
Honestly, I do wish I’d known he would agree with me if I decided to say no. I was really expecting it to prove highly controversial, and for him to try to talk me out of it. So I was getting myself all agitated and upset about it, only to hear him say: “Good girl, that’s what I’d have done!” So I came out happy that I hadn’t done anything contrary to medical advice.
ALL medicines have risks and side-effects. So the art is in finding the right balance between what you might gain, and the risks and side-effects you’d have to accept in return. Now if somebody has very aggressive MS, and is relapsing all over the place, this might be a “no-brainer” - the scales come down very clearly on one side - some effort has to be made to stop it, and the risks and side-effects, in context, are a small price.
However, if someone has been relapsing only infrequently, their relapses have been mild, and they have recovered well, the scales might be much more finely balanced. For someone who is having few relapses in the first place, a drug that sets out to reduce them may not have a major benefit, so the question about whether any risks and side-effects are “worth it” comes more sharply into focus. What is an “acceptable” risk, or an “acceptable” side-effect isn’t a concrete thing: it depends how desperate the situation is. If it’s very desperate, most people will accept higher risks and worse side-effects, but if it’s not at all desperate, they might be reluctant to accept ANY risks or side-effects. The same goes for the doctor too: they won’t want to subject the patient to any higher risk than the situation demands, so for every medicine (not just DMDs), they have to weigh up: “Will the likely benefits outweigh any possible downside?”
There isn’t a right answer: it’s a juggling act.
“Doing well” isn’t a medical term - even though I keep being told it by medics. So there is no measure of what “doing well” really means. I suppose they just mean - “compared to other cases that they see.” However, it definitely doesn’t mean: “symptom free”. I feel ill every day, and they know I do. If I had no symptoms, I clearly wouldn’t be on 11 prescription tablets a day, AND additional painkillers as needed! Nevertheless, apparently I’m still “doing well”. I guess that means low levels of disability, relatively stable condition (not relapsing madly, or showing an alarming rate of disability progression) - that sort of thing. No, sadly, it does not mean “feeling great”. Even people with quite minimal levels of disability can suffer badly from pain and fatigue, and not be “fine”.
Technically, a relapse is any new symptom(s) or a resurgence of old symptom(s) that lasts more than 24 hours, and isn’t accounted for by anything else - such as an infection.
So strictly speaking, a tingly finger could be a relapse IF it persisted more than 24 hours and you didn’t have a fever or a UTI or anything at the time. But if your relapse consisted of that and nothing else, it would be pretty unlikely to sway the treatment decision.
It is normal to feel tired and to have some symptoms (e.g. cramps, pins and needles) even between relapses. Some people do recover completely from early relapses, but it is more common to have some of these residual symptoms, and for them to get more prominent if you are tired or stressed, or even have a cold.
I would say the things you are describing are certainly MS symptoms, but I am less clear whether they are relapses, as they may be old damage that tends to make itself felt when you get a bit tired or stressed, and not a sign of renewed disease activity.
About half of all eligible patients say no to DMDs. That was a figure that surprised me, and again something I wish I’d known when I was deciding, as sometimes you get the impression you’re in a minority of one if you feel like saying no. Lots of people say no. Some of them, like me, with the full backing of their neuros - others will have gone against advice (which is still their right).
Have a chat about it. If he’s concerned about leaving things alone, I’m sure your neuro would have a duty to tell you.
My timeline is just my timeline. I’ve been “OK” for four years after saying no - that doesn’t mean you can generalise it to everyone. There IS luck involved. A big stumbling block is we don’t know how aggressive anyone’s MS will be in future - we only know how it’s been 'til now. That’s a guide, but not an infallible one. It has been known for people to have a serious setback even after many years of relative quiet.
However, in general, relapse activity is most pronounced early in the disease, and tends to taper off. Unfortunately, that doesn’t mean people get better. It just means relapses tend to become less of a feature, but disease progression still continues. It does have a bearing on treatment, though, because if someone has entered, or is entering, a stage of the disease where relapses are uncommon, they are unlikely to get much benefit from a drug that is all about stopping relapses.
There is not yet any drug (that I know of) that addresses the kind of progression that’s independent of relapses - that is one of the holy grails of MS research.
Tina
x
I think you need to talk to your neuro or GP and say to them what you have written here. It might put your mind at ease.