Sorry this has probably been done to death. But I am seeing my neuro next week and would like some evidence to justify me requesting another MRI head and spine. Couldn’t find it in NICE. Can anyone please point me in the right direction. Also tell me how often you have had MRIs and why? I had head and spine August 2010 and nothing since. I would just like another to see if there are any changes. So ok won’t change how I am I would just like to know. Many thanks Min xx
I’ve never had an NHS MRI.I paid £800 for two private ones whilst being diagnosed 12 years ago to save waiting three months.Five years ago I suggested to my Neurotic that I might pay for a private one to see what was happening.He thought that was a reasonable idea but never offered an NHS one.
I see the reasoning for there being no real reason for post diagnosis scans,but by making this policy the NHS must save £ Tens of millions and cut down waiting lists by not scanning any of us.I’m synnical about lots of things appertaining to us.The number of MS cases in the UK is an estimate,and what is that about in this high tech digital communications age.
Wb
I would hate to be diagnosed with MS twice, so just the one for me.
I had one, paid for by health insurance, for diagnosis in 1999. I had one to see if I was suitable for Tysabri (active lesions) in 2011. I don’t believe they tell you anything more than you already know about how you are.
I had 2. One in Nov 12 which confirmed ms, and 2nd 3 months later in feb this year, which confirmed severe/rapid ms.
I was the same as Val only one for me too back in 1994 and my MS deffinatley worse now 
certainley dont need a second diagnosis, once was enough
For me, the ideal frequency (after diagnosis) is never. And so far, I have my wish.
I don’t want to keep a running tally of how many lesions I’m accumulating. I’m quite sure there must be more by now, because that’s the nature of the beast.
But number of lesions is not strongly correlated with disability anyway. Location is more important than how many. Just one in an unlucky place could be more disabling than a peppering in places that are not so crucial.
To paraphrase what Sewingchick has already said, I’m the best judge of how I am. I don’t need pictures, or arbitrary counts of numbers of lesions, to be able to tell.
It’s a bit off topic, but there has been at least one reported case of someone living a normal life with only one brain hemisphere (not due to MS). So really, just looking at pictures of the damage is a very crude indicator of how a person will or won’t be affected.
Tina
So true. I had nearly double figure around my ventricle area in Novembers 1st mri, and all my symptoms were mainly sensory.
Fast forward to now and it is affecting my brain stem, which in turn is affecting my movement and walking in a scary way.
Just to add my tuppence worth of experience to the replies, I had one done for diagnosis. Then there was nothing for about 7 years, but had one before I started Tysabri as it’s needed to help decide if you meet the criteria to qualify. Since I’ve been on it I’ve had a couple more, just as a precautionary thing because if the risk of PML.
It’s pretty expensive though to have a scan. So sadly, what with public spending constantly being squeezed, it’s highly unlikely you’d be given one just for the sake of interest (though talking of interest, have you ever seen the results of yours? The last time I saw my neuro I asked to see one of my scans, and did find it really interesting to see inside my own head.)
Dan
Thanks so much guys. I’m getting MRI on diagnosis only with no regular ones after. Wb - disgusting you had to pay for 2 makes me mad. I get what’s the point of repeat MRIs - not going to change anything and you are how you are Hugs Min xx
I have had 4. One a year since I was diagnosed. But that is because of the Tysabri I believe. My hubby who has MS had 2 when he was diagnosed 8 years ago and hasnt had one since.
I queried an mri at my last two apps. Tols by the consultant he can see whata going on and doesn’t need an mri to tell him my m.s is a active at that time. Asked m.s nurse and she agreed with the consultant abd also said that I may still only have a few lesions but its where they are and whether they or just one of the five are active. She also said someone may have lots of lesions but if none are active then there symptoms may be less. My last scan was in 2011. She also said its not good to keep going in these scanners and is not necessary ay this point. Apparently used for diagnostic, if sudden deterioration or repeated relapses and to monitor how things are going when on dmds I believe. I do agree with the above but in some sense am intrigued so like to see my brain and prove to people I have one 
Xxx
I queried an mri at my last two apps. Tols by the consultant he can see whata going on and doesn’t need an mri to tell him my m.s is a active at that time. Asked m.s nurse and she agreed with the consultant abd also said that I may still only have a few lesions but its where they are and whether they or just one of the five are active. She also said someone may have lots of lesions but if none are active then there symptoms may be less. My last scan was in 2011. She also said its not good to keep going in these scanners and is not necessary ay this point. Apparently used for diagnostic, if sudden deterioration or repeated relapses and to monitor how things are going when on dmds I believe. I do agree with the above but in some sense am intrigued so like to see my brain and prove to people I have one Xxx
Unless you want to change DMD then I don’t think extra scans will be of any benefit. If you have highly active RRMS they need to show changes over time on a couple of MRIs to be able to prescribe tysabri.
Well I’ve had three in 5 months. I suspect I’m radioactive as I gave my horse a shock after the last one!
The first one was done as an emergency in A&E. Results within a hour, lesions on my brain, MS was mentioned and subsequently formally diagnosed 10 days later.
Fast forward two months later and new neuro says no not enough evidence for MS - diagnoses me with a CIS and sends me for another MRI. That was a month ago and I’m still waiting for the results despite chasing them. 3rd MRI was on Monday. No idea why I needed another one at this point but heyho. I’ve given up expecting to be kept informed.
I suspect I will be diagnosed again Once in a lifetime really is hard enough. In all honesty I don’t know how I will cope if more lesions are found as my neuro won’t start me on DMD’s until I have another attack.
I had one in 2007 when I was diagnosed. At the time, they said I’d have another in 5 years but it never materialised. To be honest, I’m not really bothered. I’d rather the NHS spent its money on other things, rather than an MRI wihich will just confirm what we already know. Seems a waste of time and money to me.
I’ve had 4,al with contrast, my neuro says it is a tool to see any active leisons.He is thinking about tysabri or mitox. And the last time I saw him about 6 months ago and he said that I didn’t have too much activity so he wouldn’t give me anything to help,I feel abandoned. My lovely GP has given me LDN which is brilliant
Lynne x
l had a MRI to diagnose ms 30yrs ago - and l had private insurance which paid for it then. Never been offered one since for ms but have had one for my arthritic knee - private again - showed that l had no cartilage left.
Never been offered one on the NHS - but then they do not help your ms.
Well done Lynne43 getting LDN from your GP. Lucky girl.
F.
“Well I’ve had three in 5 months. I suspect I’m radioactive as I gave my horse a shock after the last one!”
I’m sorry Humbug, but I’m fairly sure MRI doesn’t work like that. I’m assured that it’s not like other scans (like CT) that can cause radioactivity, but magnets. I queried this with my consultant ,who has had 28 MRI scans, (for research purposes).
I’ve had 3 so far and bought a disc with a copy of each one. I was interested in seeing the inside of my head and how it’s changing. I’m on Tysabri and the last one was a regular annual MRI to check how I’m doing…
I’ve never paid for an MRI, they’ve all been NHS.
You’re not alone Min in wanting to see what’s changed, hope you get one!
M x