Last reply 1 year ago
How often should we expect an MRI scan?

I am interested in gauging whether the frequency of brain and spine scanning reflects where you are in the UK and your condition. It took me some time to have an agreement for my initial scan but there has been no follow-up. That was 18 months ago; my condition is reasonably mild currently but we all know MS can sometimes be the quietly doing damage.

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Anonymous
1 year ago

Hey!

I have an annual MRI – It’s this afternoon actually, super nervous!

I am in Edinburgh Scotland.

I think you are supposed to have one annually, it helps track and progression and means they can evaluate the effectiveness of DMDs.

Avril


tracyd
1 year ago

@knotty
I have MRI scans every year full brain and spint with and without contrast. I’m very proactive about making sure that they happen by emailing my Neurologist and MS nurse before Christmas each year to ask them to set them up knowing full well that it will be about 3 months before the scan actually happens (and it’s due around February each year)


knotty
1 year ago

Hey Avril thank you for your comment. Good luck today. Knotty


knotty
1 year ago

Thanks Tracy -where do you live in the UK?


tracyd
1 year ago

@knotty
Near Reading so Berkshire however my neurologist and MS nurse are both Hampshire xx


knotty
1 year ago

It will be interesting to see whether an annual MRI is the norm. Sounds like I may have to do some proactive chasing!


tracyd
1 year ago

@knotty
One of the first things I did was ensure I built a good relationship with both my Neuro and my MS nurse, if I need to see my MS nurse I invite her for lunch at Costa by text or email and I go to her. My Neuro I email with things like my monthly Lemtrada blood results in a handy Excel spreadhseet format so that she can see everything at one glance ….. the control freak project manager in me regards that as ‘risk mitigation’ since the most important person my health and well being is actually important to is me I like to be in control of it.


knotty
1 year ago

Sounds like you have a fantastic relationship with both and exceptional accessibility. My MS nurse is lovely but so overwhelmed with her workload; maybe I sympathise too much as others need her more. My neuro no comment! My MS neurologist seems to be happy with my progress but I only see him once a year and he is not very engaging. I think I will consult my GP who was able to cut through the red tape and initiate my first MRI as the neuro did not authorise. Sleepy Worcestershire!!


mrratcatcher
1 year ago

I have not had any routine MRI scanning – Initial one in 2011 and then another before starting Tysabri, a 3rd to show it didn’t work in 2013 and nothing since.


mmhhpp
1 year ago

Hi in 7 years only 2 scans. At diagnosis and last year when things started to go rapidly down. I think if the situation is stable they will not run them.


daniel2025
1 year ago

My ms doctor and ms nurse let me have MRIs when ever I like. I have had 3 in the last 6 months. They do prefair them yearly but the only concerns they have is the amount of time your in the MRI scanners for. They say it can’t be nice been in the scanner all that time. I said to them I don’t care what so ever how long I’m in the scanner for so because of that they are happy to do them and let me request them when I want them.

I’m from Hartlepool and ms care is in Middlesbrough


tracyd
1 year ago

It seems to me that the only way to make sure everything happens when it should and as it should that being proactive and standing up for what your want is the only way. The shceudle for MRI’s after a diagnosis of MS is once per year. If a neurologist is refusing to order them then prehaps a new Neurologist should be requested. The changes in Lesions and their activity should be tracked each year regardless of whether someone feels like they’re having relapses.
Its probably because of my project manager mentality (yes I officially have 2 things wrong with my brain – MS lesions and project management neural pathways) I don’t trust anyone including medical professionals to have my best interests at heart anywhere near as much as I have for myself so I don’t wait to be offered anything or wait for others to remember I make sure that I have requested it in plenty of time.


highheeledfagin
1 year ago

I’ve only had two in thirteen years – one for diagnosis and one a few months ago to see if I can/should change DMD and have Lemtrada.

I’m rrms in London.


daniel2025
1 year ago

I’m shocked at the two people who haven’t had a MRI in years I mean no disrespect by this but this is your health and well-being at the end of the day. You need to be proactive and demand a MRI if its refused change neurologist at the end of the day how can you tell what damage ms may or may not be doing. At the end of the day if there is activity and white matter lesions its best to know as soon as possible so you and your neurologist can make decisions to whether or not your on the best treatment. Don’t let them mess you about and change the neurologist if they continue doing so.


highheeledfagin
1 year ago

Dude, I’ve had MS for thirteen years so don’t preach at me. Whenever I’ve asked if I’m due for an MRI he just doesn’t see any reason why if nothing serious is happening. As soon as bad things did start happening, he sent me for a scan. He’s a really good doctor who has been doing this for years so I’m not going to treat my treatment like a Yelp! review and try to leave the head consultant because I want to know where the legions are: when the information is relevant I’ll find out.

My wife had her first set of MRI’s back in october when she was diagnosed with MS. This is a question we have been asking and I have been researching. Couple thoughts. Having information is good but particularly if it could be used or potentionally used to make a different decision in the future. If there is no situation where you would do something different, you might be curious, but it may not be worth getting it. Like most things there are always potentional risks and here is an article on the contrast worth at least considering:

http://www.nationalmssociety.org/About-the-Society/News/FDA-to-Study-Potential-Risks-Related-to-a-Commonly

So we started Tecfidera at the end of Dec, but since it can take 12-20 weeks to become effective, having another MRI before that time wouldnt cause us to stop or start the medication because it could still be that the medicine is going to work but hasnt fully yet. So we are targeting about May for the next MRI so we have a baseline. Then if we know the Tec is fully effective and if we see new legions after that, we know the Tecfidera might not be working/sufficient.

One additional thing to consider is brain volume. It might not be that there are many symptoms but MS causes a faster rate of brain shrinkage. Today most MS centers dont mesasure brain volume loss. However there are now places that can take your existing MRI’s and calculate the change with MRI’s done in the past. The tricky thing with measuring something that is on order of 1% a year is that during the day your brain volume can change by 1%, based on time of time, fluids etc. So one additional thing we are doing is trying make sure we take the MRI’s at the same time of day whenever we schedule them.

So in short the questions I am asking:
o Will the MRI cause me to change a decision we are making?
o Will the MRI we take today help us make a decision in the future?

If we cant answer yes to the above, I think we will bias against taking uneccessary ones. In our case we have changed our diet, medication etc, so taking one in May will let us make a decision to continue or change after that.

Just thinking aloud with everyone. Let me know if something seems off or if anyone has more thoughts. We are still trying to decide what to do…


daniel2025
1 year ago

Simple as that doctor is 100 percent wrong MRI is important to be done at least once a year. You claim you know more because you have had ms for thirteen years well looks like it don’t it Not. If you want to take risks with your health go ahead. Every single neurologist I have ever spoke to has said MRI scans are very important at least once a year so they can see the direction of the disease is going. PS my neurologist is the head neurologist at the hospital I go to. Its clear I know a lot more about the disease than you. Your response comes across as someone who doesn’t have ms and is looking to troll the website. Also @highheeledfagin my name is not dude. I took offense to your post I have nothing more to say to you. I would rather speak with nice genuine people who actually have ms like I do. If you where a genuine person with ms why attempt to stress me out. You would have thought you would know your supposed to reduce stress. I have no more time for someone who is faking. And don’t come back saying I’m faking because I’m not. The housing association rushed though a bungalow because I was falling down the stairs of my flat they don’t just give bungalows to anyone. I can describe every detail and side effect of the lemtrada I even know the cost of lemtrada to the NHS my ms nurse told me. And I have to have blood and pee tests monthly when I see my ms nurse. My guess is you have never seen a ms nurse in your life. Its not nice to posts like what you posted and to boot there is a load of stuff that just wouldn’t happen. If you have not had a MRI in years and do have ms which I honestly doubt your neurologist is not doing his job correctly.


Anonymous
1 year ago

Hi @knotty – good question btw. I’ve had 1 MRI at diagnosis 11 years ago. I haven’t seen my neurologist in years and have been in touch with the ms team a hand full of times over that period. I’d rather not know and go by how I’m feeling. This might change for me in the future – who knows I’m in a very happy place right now.


naomih
1 year ago

Hi @hiheeledfagin. I’m with you. I had 2 mris in 12 months, thought it would be annual but my neuro asked me “what do you expect a new mri to tell us” ! I’m a massive drain on the NHS already and if I thought a scan would make me have ms any less I would be banging the door down for one!! Unfortunately it doesn’t, so I’m happy to wait until it’s appropriate.


velvet
1 year ago

Usually I have an MRI once a year.
If they spot any changes then I’ll have another in 6 months and if there’s no further change it goes back to 12 months again.
I’m in Devon.


highheeledfagin
1 year ago

Hahaha. If you think I’m a troll you just haven’t met me at a shift.ms event, yet – member of The Energy, creator of MShacks, in a couple of videos, etc. Unlike you, I don’t claim to know more than others about what is best for THEIR MS, this disease varies as does how it is approached by different healthcare trusts. What the years have taught me is respect for their processes and decisions and that it’s arrogant as hell to assume to tell them that they should just agree with you.

Sorry to see the comments took a turn for the worse on this post 🙁 I think one think we can all agree on (hopefully?) is if anyone really knew all the answers, MS would be cured right now. Since its not, all we can do is make the best informed decisions based on where each person is at. My belief is you need to be your own advocate. Regardless of what the position of the dr in any ms center, hositpal or office is still going off of overall averages and their best guess. There are tons of medicines that are often perscribed and new information comes out (like steriods) and they are used more carefully. MRI’s, at least with contrast, may fall into that bucket.

I really think the only person on this thread that probably doesnt have MS is me. My wife does though and I do appreicate being part of this community. Hopefully having MS is not a requirement to be involved.


knotty
1 year ago

Thank you all for your passion and consideration. As with MS itself, it seems attitudes to MRI scans can differ both with patients, medical teams and resources. I for one like to be in the driving seat (I’m a control freak!) and certainly given that I have not been on medication for long, it would be useful to see whether that is helping in any way. All your comments really appreciated.


thecuriosity
1 year ago

@knotty I think the consensus is that there is no official rule, so you should talk it over with your team and work out what is best for you.

I’m get yearly(ish) one, which is best for me because I work a ridiculous shift pattern and then drive everyone nuts as I can’t and won’t just drop work for an MRI, instead I move it to a time it’s not bothering anyone. I also basically don’t have more than the very very occasional tingle since I’ve started my medication so frankly I’m happy.


tracyd
1 year ago

@knotty
Regular use of the MRI allows the neurologist to track your disease progression.
The number and location of the lesions can be tracked to the relapse symptoms that can be experienced, however not every lesion has a direct physical ‘relapse’ manifestation, so lack of an obvious relapse does not necessarily mean the disease is inactive.
MRI’s are also used to measure brain atrophy which is the natural ‘shrinkage’ of the brain – for people with MS happens at a higher rate than it does for people who do not have MS as a direct result of lesion accumulation and decay – when the scar tissue of a lesion ‘breaks down’ it leaves a ‘black hole’ in it’s place – new brain does not grow into the space the brain ‘shrinks’ into it to the space to fill the hole.
The desire to have regular MRI’s or not to have them is obviously a personal and emotive thing as evidened by this thread.
Like you I’m a driver not a passenger, my MRI’s are absolute evidence that becuse of my treatment – my MS is NEDA that I have no new lesions, that my old ones are all inactive, they are also evidence that my brain is only shrinking into a shrivelled walnut at the ‘normal’ shrivelling rate 🙂
Evidence is important to me – regardless of how awesome I feel, the MRI’s are proof that I’m not just being optimistic


mmhhpp
1 year ago

Well, i think MRIs should be done when they are going to show something that would let doctors take a decision on eg. Medication.

But even then i don’t think an MRI can give you 100% reasurance on anything! I believe it is an indicative tool. They don’t show you the full picture.

Last one it was run on me show no active activity (after 6 years of diagnose) and that shut doors to any stem cell treatment and other medications! So…you need to think of the consecuenties of running them.


potter
1 year ago

I haven’t had a MRI since I was diagnosed I have been on two different DMT’s and have never had a relapse. My neuro ask me if I want to do a MRI so he can check and see what is going on in my brain. I tell him no I don’t have the money right now. My insurance has a huge deductable I would have to pay up front so basically I just have to pay for the MRI. I haven’t priced one lately but they were 2,000 dollars the last time I checked. My question is how many MSers would pay for a yearly MIR scan themselves. Potter


daniel2025
1 year ago

Well I’m in the UK so there free here so I will continue to get them when I want

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