Have not had an MRI for over a year and a half and have just had a bad relapse. Do you think I should ask for an MRI and if so who do I ask?
It is not usual to have ongoing MRIs after diagnosis, unless you are being considered for a more powerful DMD (some require MRI evidence of aggressive disease activity), or there are doubts about how well an existing one is working.
If you’ve recently had a bad relapse, that in itself is evidence of disease activity - an MRI wouldn’t tell you much you don’t already know.
I’ve never had another MRI in over 4.5 years since diagnosis, and certainly have no desire for one. Not because they hurt or anything - I know that’s not the case.
It’s just that, with no decision resting on it, I don’t know why I’d need to know. I’m sure there would be new lesions by now - I’d be very surprised if not, as that’s the nature of the beast. But I don’t think I want or need to see them. The best indication of how you’re doing is how you’re doing - you don’t need an MRI to tell you how you feel, or how you are affected.
Lesions are a poor predictor of disability, as they don’t all cause symptoms, so I don’t really see what routinely having a count achieves - except being needlessly depressing.
MRI is mostly useful for diagnosis - not often ordered afterwards.
actually makes sense, I suppose it’s just nice to know what is going on in your brain.
My neurologisist was talking about dmd’s on our last visit a year ago but hadn’t had a relapse then so maybe now she may want me to start.
Can anyone give me advice on buying a travel scooter? So many on the market and all so heavy, despite being supposedly portable.
Sorry, no idea
The first decision is what you want to do with it. I use my scooter for walking the dog. It doesn’t need to go in a car but has to be robust enough to cope with uneven paths.
some of the lighter, car transportable scooters are great in shopping malls but not so good on cobbles!
You are right though some of the transportable scooters are still much too heavy for a disabled person to lift alone. I watched some videos of people putting a Luggie into a car and they seemed to cope OK but they are very expensive. Some companies will bring scooters out for you to try (TGA have brought scooters to me in the past)
Like everything else buying a scooter will be a compromise. If it is very light it won’t be robust, if it is able to cope with more than completely flat surfaces it will be heavier. I have known people to have 2, one for the car and one for more tough going
I have had a Stirling Emerald for about 6 years and have been very pleased with it but I suspect it is not the sort that you are looking for (not transportable)
Personally I’d ask for one and have done in the past. They can only say no. I’d want to be getting another MRI with the view to having a DMT discussion once the outcome is known.
I had a relapse end of October last year a 7th nerve facial palsy. I was referred to see my MS neurologist, who referred me for another MRI scan. This time brain only scan. I’ve had three MRI scans now in the two years i’ve had MS. It showed a few new lesions and this gave confirmation I needed to start Tecfidera, my first DMT.
I’m glad I had the MRI scan as my MS has been quite active.
hi Lynda, I am buying a portable scooter his week. I was looking for a light one that can easily fold and out in the boot of my car. The two best ones I have found are the luggie and the travel scoot, if you google them you will get loads of info.
Thanks guys, think your right to ask for another if considering drugs in the long term
I usually seem to have an MRI every 4 years but have to be honest the knowledge I’ve learnt from each one has been interesting but not really especially useful. Yes I have lesions. Couple have disappeared, one slightly bigger etc etc. nothing that has ever made me think (or my neurologist) that more frequent scans would be useful.
As for scooters, love love my Travelscoot. Lightest by far, easy to transport. My main problem is my legs but I have good control of my upper body. It’s only a 3 wheeler and I have seen some people say they found it unstable. I’ve used it on cobbles, firm forest paths, in shopping centres even fairly steep hills. It’s easy to take on planes and I realised how convenient it is recently when we visited Australia. Decided not to take it as I was worried about it getting damaged in transit. Instead I rented a ‘lightweight’ scooter when we were there. It was about 4 times heavier and much less convenient for nipping around on
I’ve had 2 MRI scans in 17 years - 1 as part of initial diagnosis, and second one about 5 years ago pretty much when it was considered that I had moved from RRMS to SPMS. (Assume this second scan was to confirm suspected progression?)
As for scooters, I really don’t think this subject should be discussed here - it’s not what this thread was meant to be about !!
Discussion of scooters should have been its own thread, and disappointed that this wasn’t already suggested to the original poster by the more regular contributors.
What happened there - Cross wires.
In my own experience, once one has a RRMS dx, MRIs usually happen when:
(1) There’s something odd going on in your central nervous system that doesn’t quite look like ‘just’ MS, so they want to take a look to eliminate the risk fo something worse.
(2) You are getting bad relapses despite your DMD and they are wondering whether something a lot stronger is needed or just a bit stronger.
Your situation is a bit different, so I’m only guessing, but it is possible (I think) that, if your neurologist would like to get started on a DMD, the neurologist will want an MRI just to have a baseline picture of how things were when you started it, or to inform decisions about which one to recommend for you, depending on how your scans looked. Or maybe how your MS is presenting clinically will tell the neurologist all he/she needs to know to get you started on something suitable without further scans. You need to ask the experts…
I am sorry that your MS has reared its ugly head again. I hope that you can get it under control again soon.
I meant, of course, if YOU would like to get started on a DMD. Your neurologist’s ailments are her own affair!