Hi there, I’m new here and I hope I am typing this question in the right place.
I was diagnosed with “mild MS” 2 years ago, and my symptoms are mainly sensory. I was not offered medication and I was told to wait and see, and cross my fingers that it would not get worse. I’ve been ignoring my symptoms and getting on with things. Tingling, numbness, poor coordination are now “normal” to me. Infact, I’ve forgotten what “really normal” feels like, and if I am honest my symptoms are more extensive - though still only sensory. More recently my limbs become tired much quicker despite being very fit.
I am looking for information about the new medical thinking that was announced this year regarding early treatment as I’m now wondering after the announcement this year if I should be on medication. I’m worried damage is building up gradually.
My question is, are neurologists now prescribing medication for mild MS where they would not have done so in the past?
I have a nero appointment in a few weeks, but I’m curious as to any changes that have occurred in the treatment procedure in the last few months. If I push for it am I likely to get medication, or are they still saying no?
That is a really good question. My uninformed guess would be yes, they are probably quicker to prescribe DMDs than they used to be as the evidence develops in favour of earlier intervention. The range of options has changed dramatically in the past 20 years. The pharmacy cupboard, once bare, is now brimming with options for people with RRMS - none of them perfect, none of them trouble-free, but they’re there.
My guess would be that the ‘wait and see’ approach is generally less favoured by neurologists than it would have been even 10 years ago. Which doesn’t mean that it isn’t sometimes right, of course. Here’s another guess: as the proportion of neurologists who have practised (or even been trained) in the pre-DMD era dwindles, and patient awareness of the treatment options available increases, I would bet on the tide of ‘wait and see’ receding further. Life being as it is, it would be no surprise to see ‘wait and see’ falling further out of favour than it actually should do. These things always have a strong element of fashion - don’t they? - however much we like to congratulate ourselves on being evidence-driven, rational agents…(and that applies to medical professionals as well as to civilians like us, I think). In particular, the urge do ‘do something’ doesn’t always mean that ‘doing something’ is the best thing to do. Where the early presentation of MS is mild, it is always going to be tricky, knowing what to do for the best. (In my own case, I couldn’t get on a DMD fast enough, but then my MS had gone off with a bang. I do not know what I would have wanted to do in your shoes.)
Anyway, definitely worth a chat with your neurologist to get his/her views on your options and the best approach for you - and perhaps some general comments on how neurologists are approaching all that, these days.
Hi Alison, thank you for your response which is really useful. Initially I didn’t want to go on the meds as I know they have their side effects. I’m aware my legs are being affected though (albeit sensory and coordination, particulalry when I’m exercising) and something is telling me I should be preventing the damage that is happening now.
I’m not sure anything has actually changed for patients re treatment plans since the medical announcement earlier this year.
I was diagnosed in July following nearly 3 years after first seeing the neurologist. My symptoms were mild spasticity, tingling, muscle spasms in my right leg and blurred vision when running or exerting myself.
I have been hankering after DMDs since then, as like you, I feel that I could be preventing a worsening of my disability (I can no longer run and walking 200 yards is exerting myself). My neurologist has told me no I’m not entitled to the DMDs because I don’t qualify. You have to had two significant relapses within two years, I have not, though I can pinpoint times of new symtoms occuring, then these come and go until the next activity. He has also suggested the possibility of PPMS (please NO), but wants to monitor me for 5 years so he can decide whether the disease activity is that of RRMS or PPMS.
Until 3 years ago I was incredibly fit, running regularly, gym and spin several times per week etc. I don’t want to ‘wait and see’ how quickly this disease can steal parts of my life. I know I can’t stop it, but If I can slow it, I’d like the opportunity, waiting 5 years for another diagnosis and another state of limbo without being proactive with drugs that may help me seems unfair.
Anyway, sorry to rant on your thread, I’m getting a second opinion in the New Year so fingers crossed for drugs, otherwise I’ll start self medicating, that will only help my mental state though.
Sorry to hear that you are having a difficult time. After the medical announcements earlier this year it would make sense for the criteria to be modified, but it sounds like maybe this hasn’t happened yet. Fingers crossed with your second opinion in the new year.
