Can I just ask how long is normal to wait between a diagnosis of active RRMS and the introduction of DMDs? I’ve just had my diagnosis (second opinion after many years of an ms diagnosis) and im waiting until April for my neuro appointment. Does that sound right? I know there are waiting times im just eager to get started on them as my last scan showed a lot of lesions. I’m based in England. Many thanks. Xx
Might help if you say where you live.
The traditional method is not to rush into treatment too quickly but to see if there are more indications to confirm the diagnosis and its severity. In my case they decided to offer a less aggressive treatment than originally planned. In other cases they might have decided to take a more aggressive course.
There are neurologists are more gung-ho charging in with both feet.
The DMTs are all serious drugs not to be taken lightly. From your other posts you appear to have already been in discussions about possible options. People on this site have been waiting a lot longer for an appointment to discuss options what to do after a treatment has proved unsuitable.
Not much comfort but the MS service is very stretched in many places.
Thanks for your reply I haven’t seen my usual neuro for a while. I was transferred to a professor in London for his opinion on my ms and during that time I had an mri. The professor has recommended a treatment. I just wasn’t sure whether it was something that would be picked up quick or whether it’s usual to wait as my last scan showed I have active ms. I have waited years with an MS diagnosis before deciding now on treatment as my neuro didn’t want to rush into anything. I think my issue is I keep getting confused between a relapse and it being active. I don’t really understand the difference tbh…and if it was a relapse surely they would treat it with steroids? I don’t know it’s all confusing my brain right now lol….oh and I live in England xx
Not sure about ‘right’ but it doesn’t sound unusual. There’s no harm in making a mild and polite nuisance of yourself, reminding the neuro’s secretary that at the first sniff of a cancellation you will drop everything to be there etc, see if you can get seen a little earlier. I completely get your anxiety to get started and I share your views.
Thanks for your reply Alison I don’t suppose you could tell me the difference between a experiencing a relapse and showing you have active ms on your mri as wouldnt that mean your having a relapse anyway? I seriously need to get in to see my ms nurse I think. It’s seriously not sinking in 
xx
I think we are all confused by the terms used. I take a relapse to be new symptoms or a worsening of old symptoms for more than 24 hrs without an infection. If there is an infection it will be labelled a pseudo relapse and should resolve itself as you recover from the infection. Sounds easy but often isn’t. I had Nystagmus with no infection so qualified as a relapse. I had a major mobility crisis and tested positive for a mild case of COVID a couple of days later and this was counted as a pseudo relapse even though it is taking a very long time to claw my way back from it.
Active can mean you are suffering relapses and very active that they are frequent. Also used if you have an MRI with contrast and lesions “light up” showing they have not yet resolved.
Understanding the language helps you to talk to your Consultant and Nurse , but as with all things some are better than others. Asking open questions is likely to be more effective than saying I read this on the internet! They really do know a lot more than anyone here and have the advantage of observing and examining you.
The NICE guidelines are fairly anti over prescribing steroid. However, they seem to still be used widely in some areas.
My reading is they should only now be prescribed for new severe motor symptoms or those to do with vision. Research indicates that a 5 day course of oral steroids is as effective as the 3 day IV steroids.
Besides the well known short term side effects, overuse can lead to other things such as bone problems. The guidance says not more than twice per year.
I view them like antibiotics only to be used if highly appropriate. I suspect they are sometimes prescribed (like antibiotics) for the sake of being seen to do something.
Steroids do not change the course of MS but may speed recovery from a relapse.
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I completely agree with you about steroids and also antibiotics.
I’m sorry, I really don’t do clinician-speak.
I am sorry that it has been such a long road to dx for you, and I hope that you have a proper discussion about treatment and get on an effective DMD as soon as possible.
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Omg you are amazing thanks I understand a bit more of the reasoning now behind treatment and no treatment and relapses - it’s been muddling my brain since my appointment last Tuesday xx
I don’t suppose anyone can tell me if it’s quite common to have brain stem lesions or not? Or where to look as I can’t find much actual medical literature that says how common it is or is it worth starting a new thread?? Xx
If you’re interested in this stuff, you might find this helpful. Produced by an unusually well-informed ex member of this forum, it remains a pinned post at the top of the newly dx section of this MS Soc forum.
Ah thanks Alison xx
I don’t worry too much about detail on MRI. I did look up the details from my original scan when I was hospitalised and diagnosed. It was clear there was damage in a number of places. Locations correlated with symptoms but does not impact treatment and decided it was not useful in that there was nothing I could do with it.
I would go here as a starting place
Thanks I’ll have a read - me being me I just like to understand what is happening and why I can’t really get my head around it as I believed I only had 5-6 lesions in places common for ms but that unfortunately is not the case the neuro didn’t count them all but I asked him to show me and he was like it’s there it’s there it’s there etc there were actually too many to count. I asked him if it was in my brain stem which he straight away pointed out several areas where lesions had grown. But that was it I couldn’t think straight I was in shock so I’m left with a million questions now xx
My own experience is that I can sound superficially plausible when I get a few bits of jargon that I half-understand half-right. Clinicians have on occasions started talking to me in clinician-speak as if I knew what they were talking about, which quickly turns out not to be the case, leading to muddle (mutual) and embarrassment (mine). So my hard-won advice would be to take care with this stuff. Learning the words without the underpinning knowledge to match can lead to confusion. My advice would be to converse with clinicians in plain language and let them do the same back.
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