MRI Scan and New Lesions

Everyday living
1

Hi Everyone

Follwoing my MRI scan saturday evening, I was called with my results. I now have another 5 lesions (2 active) since my last scan which was two years ago. Is this a large number of lesions? and does this mean this is primary progressive MS or secondary progressive MS ?

I was on a trial drug for just over a year which was supposed to reduce relapse rates.

I am quite new to all of this so don’t really know what to expect and what is generally a “normalish” number of lesions.

I am hoping that I will now be given DMD’s but the doctor is still saying I have not had a relaspe despite having active lesions.

Oh so confused.

Appreciate any help please

xx

2

Hi If you get relapses, it will not be PPMS as our disease does not relapse, it just progresses. Hth Teresa xx

3

Hi

My MS has been active for several years and I have numerous lesions. The number does not signify as there can be evidence of many with few symptoms and no disability or even few with a lot of disability.

The MRI will be compared every three years or so unless there is a major relapse. If worried chat to your GP or the MS nurse.

Try to stay relaxed and get on with life.

Cheers

Moira

4

I’ve had 5 and one in my neck and I was relapse remitting and while on Copaxone I

had further T2 lesions and was still RR.

Dec 2010 I had a relapse and something going on everyday tingling, weakness, motion sickness, twiching, pain in thumb

etc etc list going on and well all that changed from Neuro Bod was RR highly active.

I’ve had 6 MRI scans in the last year or so with the odd little extra ones showing up.

I know some people that have more lesions than me and they are RR and pretty stable with non of the above.

Its where the liesions are and how it affects your mobility etc I think.

If your condition has changed then your Dr will assess how you are and what your mobility etc is like.

5

I’m not surprised you’re confused!

One of the classic features of MS is “clinically silent” lesions - in other words, lesions that don’t cause observable symptoms. (This is why someone might initially present with only one symptom, but have lesions all over the place.) So, while it’s probably not common, it could be that you have been lucky in that your new lesions haven’t arisen in any “important” area. BUT, having any new lesion means that your MS is active and that means that there is every chance that the next new lesion will happen somewhere important.

If you have RRMS and were currently on a DMD, and assuming that your last MRI wasn’t years ago, then 5 new lesions would be considered a treatment failure by any standard. In normal circumstances that should mean a change of DMD. If you were on a first-line injectable DMD, those lesions or just the two active lesions would mean that you were eligible for Tysabri. (Remember also that you only need 2 lesions to be diagnosed with MS!)

If you have RRMS and were not on a DMD (and not on a trial), I would have thought that those 5 lesions would be more than enough to get you onto a DMD.

I keep thinking of the McDonald criteria for diagnosing MS. They state that dissemination in time can be demonstrated by a new lesion on MRI - there is absolutely no mention of symptoms or relapses. Perhaps they thought this implicit, but perhaps they were also accounting for silent lesions. I really don’t know. But dissemination in time means separation of attacks in time. So, if a new lesion indicates dissemination in time, it also means a relapse. (Btw, 5 new lesions of which 2 are enhancing means at least two attacks.)

I guess it all comes down to whether or not you are RRMS. I just found this website which confirms my (sometimes shakey!) recollection that a feature of SPMS is a lack of new lesions: Multiple Sclerosis So, the fact that you have new lesions (especially that you have enhancing lesions) strongly suggests that you still have RRMS. And that your RRMS is active.

So why is the neuro not getting out the prescription pad? Well I certainly don’t understand why not! Two obvious questions: is your neuro an MS specialist? can your neuro actually prescribe DMDs (some can’t, but keep it quiet!)?

Of course, I’m not a neuro so there could well be things that I don’t understand, perhaps about the trial you were on, the drug you were on, local PCT rules, budgets, and probably a load of other things. Perhaps his refusal is simply down to the NICE criterion that to get DMDs that you have to have had “two clinically significant relapses in the last two years”. If that is the reason, then he could at least be upfront about it! And, ideally, be flexible: five new lesions is not a small amount of activity. Knowing that your MS is active means knowing that you could have a disabling relapse any day. His job is to keep you as healthy as possible. Surely that means prescribing the best preventative meds that he can?

Not sure this gets you anywhere(!), but I hope it helped a bit.

Karen x

1 Like
6

Hi helv, I don’t think I got anything to say to help you sorry but I was interested in your post. You say you had another MRI does the hospital send appointments for this because I’ve only had one? And also what are active lesions? Take care Nicola x

7

As others have said,it’s where the lesions are not the number of them that causes the disabilites.

I thought I was slowly sliding into SPMS,but a relapse showed new and active lesions last year.I’ve had another disabling relapse since then and am now due to start Tysabri. My neuro says sensory relapses don’t count ( like to see him have one and say that ).

The last MRI showed 30 lesions in my brain,which might sound bad but I’ve only noticed a slight difference over the years.So don’t concentrate on the number.I think you should speak to your MS nurse,I don’t understand your neuro’s attitude either.

I don’t know if any of that helps at all,but mainly I just want to say,try not to worry and speak to your MS nurse.Take care,xxjo

8

Hi everyone thanks for the reply.

I was on a trial drug for 18 months - Daclizumab. The reports coming out are showing this is suppose to reduce relapses by around 50%.

However, I did have some significant side effects to this drug, hypersensitivity, stomach problems, skin rashes…to name a few.

I was first diagnosed as RRMS, so I am assuming this will still be the case.

The reason they sent me for another scan was that I kept saying that I had a relapse as I had the burning pains in my legs again. I had this about two years previous and it took around 1 year to get rid of.

Mt previous scan was two years ago but not sure if they did the same scan. This time they scanned four parts?? not sure which.

Helen

x

9

Hi Thanks for that

How is the Tysabri ?

Have you had any more relapses?

My trial drug was a monoclonal anitbody but I developed a rash, I think it was related. So not sure if there will offer that but will be willing to try any of the DMD’s

Thanks

Helen

10

I was diagnosed with remitting relapsing MS about 2 1/2 years . I am on weekly injections which i am now used to. My MS Consultant suggested oral medication but for now has ruled this out.

I recently had my annual MRI and he told me there was no change from last year.

Does this mean my MS is not currently progressing as I have also had no relapses since diagnosis?

Thanks

11

Hi

Are you aware that you’ve replied to a very old thread? You may get more replies by starting a new thread.

It certainly sounds like your MS is not progressing. But then as you are on a DMD then you’d not be expecting as many relapses.

Sue

1 Like
12

Hi,

At the last count, I had seven lesions but as is pointed out above, it isn’t so much the number of lesions as their location and activity that matter.

In my case, a cluster of lesions in the visual cortex at the back of the brain accorded with my developing double vision (diplopia). Another set of lesions in the structure that joins the two halves of the brain (i.e. the corpus callosum) gave no discernible specific symptoms. And to my relief, the single lesion in my left behavioural area (frontal lobe) hasn’t caused me to behave in any wau strangely, though some would dispute this!

For the last eight years or so, I’ve been unable to have any more scans. I have an implanted spinal neurostimulator, which prevents my being MRI-ed, for fear of damage to the electronics and/or to me.

13

I loved this blast from the past. It did make me miss Rizzo - she was always sooo informative. The webpage she referenced, saying you can’t have SPMS if you have new lesions is not there any more and I think the neuros think differently now. If you have new lesions and lots of accumulated disability, it’s called SPMS with relapses.

14

I was diagnosed with MS in 2008 and had various MRI scans conducted during that year. I recently had my first MRI scan in ten years and received the results today in the post. The letter from my neurologist states “MRI of the brain showed changes compatible with multiple sclerosis. There were however no active or enhancing lesions.” I’m struggling to understand … does that mean that I have no new lesions? Could my type of MS be benign? I would be very grateful to hear your thoughts …

15

Hi i had an mri 1 1/2 years ago and now that i have FINALLY seen the neuro she said i have too few lesions to worry about and that smoking increases the amount of lesions and that i have a lot less than i should have!!! Just read that you said just 2 lesions can make them probe further into ms makes me want to scream at her, i have every checked box on symptoms and my eyesight has gone so poor and double visioned but neuro just interrupted me and said when i get worse… (worse i can barely walk and my whole body tremors and muscle twitches!!!). I’m thinking i will have to try again, she was already to sign me off.