Forum

MRI Scans - how often do you have them?

Hi everyone

I have to say Im so pleased Ive finally found the time to sign up to this forum as I have learnt an awful lot. One thing I have noticed is that people seem to have had several MRI scans.

I was diagnosed in 2001 and had an MRI then I then had a further MRI in 2002 and thats it!?!? I rarely see my consultant and when I last needed to see him was told by the MS nurse that I needed to be re-referred by my GP as I hadnt seen him for several years.
I commenced on Rebif in 2004/5 which my nurse agreed did not benefit me. I continued to have 3-4 relapses a year all just as bad as each other. I just had horrible side effects from the dmds to go with it. I have never been told I have highly active MS but have learnt I have by reading posts on this site.
I camr off my DMD in 2007 so that me and my husband could try for a baby. During this time I wad relapse free for approx 18 months. I was able to walk further etc…

I think I am lucky that following each relapse I recover very well although over the past 10 years the distance I can walk has been greatly affected - but Im still walking.
My MS nurse did discuss going back onto DMDs after I had my daughter but no word about an MRI. I wasnt actually offered a different type like Copaxone, which after reading here seems to have helped lots of people. I decided not to go on Rebif as it didnt help. It also wasnt suggested that I have an MRI to see how my lesions are as Im sure I am riddled with them

I have to admit Im actually quite embarassed as I thought I knew alot about my condition, but after reading here I realise that actually I know very lttile . I started LDN which did have a positive effect, didnt stop relpases but had more energy blah blah blah.
I am currently not on anything as me and my husband want to try for another baby. I did say to my MS nurse last time that we were going to and she suggested after we have to think about Tysabri as she acknowledged that I probably did have highly active MS. I am a little puzzled why Im not asked if I want to try a DMD instead. I presume I would have an MRI if they want me to have Tysabri?

Would love to hear what other people think/advice they may have. Sorry for the long post and I hope it all makes sense.
Thanks in advance, I already feel that I am better equipped with knowledge and actually feel a bit more positive about treatments for the future. x

I have MRI scans most years, but I cheat - I use the one in my department at Uni and do my own analysis.

On the NHS, I had a scan in Jan 1998 (probable MS), Dec 1998 (definite MS), then the next one was 2010 to check eligibility for Tysabri (I wasn’t). The next one was 2011 to see what was going on now I’d been off Copaxone for a year. I’m now on Rebif and doing well, so I wouldn’t imagine I’d have another NHS scan until that changed.

I’ve read of people on here who have only ever had the one MRI and know of others who have them all the time because they are on trials or doing a lot of studies, but I think the norm is that we don’t have them very often.

LOL re the thinking you knew a lot about MS etc - I felt the same in 2010 when my neuro mentioned Tysabri and I had never heard of it! I’d got horribly out of date re DMDs! That’s when I joined this site :slight_smile:

I think it’s pretty standard practice to get an MRI before Tysabri because the criteria are either enhancing lesions (on contrast MRI) or new lesions (not sure of the number), but I bet there are some neuros who don’t bother - if the patient is having a lot of relapses for example. I wouldn’t think that it was essential to scan you if you were to go on Copaxone though - you already met the criteria for Rebif, and you are still relapsing, so you are definitely eligible for Copaxone. It would be best to get a “benchmark” scan though - so the neuro can see what’s going on after you’ve been on Copaxone for a while (new lesions means it isn’t working very well).

Why not have another chat with your MS nurse about Copaxone and Tysabri? See what the procedure is in your area?

Good luck with the baby plans

Karen x

I’ve only ever had the one MRI scan, which formed part of my diagnosis about 9 years ago. Maybe different hospitals do different things? (I’m in Aberdeen)

Luisa x

Hi Loola,

I’ve had 7 Mri’s I have them here on cd so I can look at them the first was round about September 2006 I was diagnosed in October 2006 I had 2 done then 1 of the brain then a few days after I had 1 of the spine done I relapsed within a couple of months so they did 1at the start off 2007 I was then diagnosed with highly aggressive relapse remitting MS I was put on Avonex I was on it for 15 months but nothing seemed to work I was relapsing and going downhill very fast Tysabri was very new then and I wasn’t offered it but in July 2008 I had another MRI and it showed my MS was getting worse very fast I kind of knew that cause I was in a wheelchair by then lol.

I was then offered Tysabri which I would of grab with both hands if I could have used them lol I started Tysabri in August 2008 and have had and MRI every year since I’ve never had a relapse since the MRI’s have shown my MS is now stable and they show a marked improvement every year I feel I’ve improved a lot but its nice to see it in black and white I’m walking and living an almost normal life again :slight_smile:

Mark x

With regard to scans and Tysabri - eligibility criteria include activity on a gadolinium- enhanced MRI (there are others). Thereofre to test your elegibility for Tysabri you would have a scan. I beleive you have an annual scan once started in the drug - I am coming up for my first anniversary and have one coming up.

Hi,

I have to agree with Anon, If you decide to go on Tysabri you would be required to have an MRI before hand. I think then they tend to do them annually to keep a check on things.

I’m sorry to say it doesn’t seem like your Neuro and MS nurse are very pro active. I’m very lucky in that I see my Neuro annually and MS nurse every six months and know if I needed to see either of them more frequently I could.

Having said all that I’ve only had 2 MRI’s in 5 years and I’ve only had 2 becuase I went through a stage of very active MS with a lot of relapses and my Neuro wanted to compare results to see changes in lesions etc…

Char

xxx

I was also diagnosed in 2001, but have never had an NHS MRI scan. I paid £800 for two private scans as my then employer was putting pressure on me to get a diagnosis, and I was going onto half pay.

In 2004 I was scanned twice as part of my screening for a drugs trial(don’t ask what). I was rejected for the trial, and never found out what the scans showed.

Two years ago I paid £1100 for an MR Venograph in Frankfurt. This showed I have a bad stenosis in my right hand jugular vein, the left isn’t much better. I believe in CCSVI, and if I stumble accross £10,000 I’ll have something done.

I have had more IV steroids than the Chinese olympic team(I found a way of getting them when I wanted ,and not when his Holiness the Neurotic decreed), but not for 2.5 years I had one infusion of Mitox in 2006 was given Copaxone straight after, but stopped it after wasting £7000 of tax payers money,as it had no effect on my version of MS.

Fortunately I am not a seahorse so don’t have the pregnancy issue to deal with. All I would suggest is eat healthily and do things which make you both happy.

I can no longer walk and can just about transfer from the wheeltrolley I made. I have had only one ‘classic’ relapse in December 2010 which was precipitated by a #hitty virus I contracted.The rest of the time is a steady abseil into absurdity.

Currently "all " I’m on is morphine patches, gabapentin,Ginger wine, Marlboro lights and Bob Marley specials. All of the medics know this and are presently unwilling and NOT ALLOWED to provide anything else to help the appalling pain in the soles of my smelly little feet.

Good luck, Wb

ps I am going to ask for IV 'roids at home,'cos I am slipping so fast that [load of very filtered words].At a cost of £25 for the course it is worth a go, as there is nothing else on offer, and my GP is a ‘good egg’

I was given a second scan two years ago because I had new symptoms and wanted to rule out anything more sinister. Got my second diagnosis and confirmation my lesion load had doubled.

I think theyre only done when there are question marks, like lesion load or something else theyre investigating. MRI’s are expensive I gather.

bren

x

Hi, I have had one which was used at diagnosis two years ago. I’m now on copaxone (has only been 7wks) and I think my consultant will determine whether to continue after 12mths depending on how I have been relapse wise. There has been no mention of needing further scans at this stage (which quite franky is a relief as it was terrifying!) x

Thanks for all your responses and I agree that I dont think my medical team have been the best. Well when your neirologist says to you the first time they meet you that they are only interested in Parkinsons you realise your not going to get very far!!

Woblyboy what are the IV roids you are talking about getting at home? Im sorry to hear that you have had such a crap time, makes me so frustarted that there isnt anything more that can be done!!

F

Hi, I had my diagnosis just 2 weeks ago and one of the questions I had for the neurologist was how often I would have to have MRI’s (I had one in August and one in October 2011 and didn’t particularly enjoy them so was hoping the answer would be not at all!) My neuro told me that they did not find it necessary to track the lesions with regular MRI’s but as I am going to be on Tysabri he would like me to have an annual MRI scan. He explained this was to track the effectiveness of the treatment which makes sense to me. As someone mentioned earlier MRI’s are very expensive and in some ways once you have your diagnosis they become less relevant. I had to have a scan in the summer as my hemiparesis came completely out of the blue, but now everyone knows that I have MS when I have an episode the doctors can be pretty certain I have a new lesion and treat me accordingly. My neuro did seem happy to answer all of my questions (although some were rushed as we ran completely out of time) so you might find it useful to ask your neuro/MS nurse and share the feedback that you got from this post. Zoe x

Hi,

I have had so many MRIs I have lost track. I have done a bit of a count back as listed below. I think I might qualify for the record MRI gong :-)l

I had one every year for the 8 years it took to get an official Dx and then because my lesions were atypical my neuro did one every 6 months that year to show other consultants. Then it was supposed to be only if things changed dramatically (in other words very rarely) but I started a rapid descent into rather bad disability so had 3 MRIs in that year.

Then I broke my neck in an accident which meant a whole heap of new MRIs for that and because I was in the machine for my neck they seemed to decide to do my brain as well. (I think I had 4 in that 6 month period)

Then a year ago I started a new and experimental drug which requires 6 monthly MRIs to keep track of changes for research purposes plus my neck has been disentegrating so I have had a couple of MRIs last year for that too.

Adding them up I think I have had about 21 in 10 years??? Crikey!!!

Luckily they don’t bother me, I just slide in and fall asleep :slight_smile:

As far as Tysabri goes I am pretty sure you would have to have one done to check your eligibilty and also if you develop any neuro signs while on Tysabri I think they have to scan you then too.

You commented that your neuro seems more interested in Parkinsons. Can you ask for a referral to an MS specialist?

Cheers,

Belinda

l had an MRI done when l was diagnosed - thats 29yrs ago. Never had another for ms. Have had an mri for a torn rotor-cuff on shoulder and one one my knee. All done privately. Because l am spms - l think that is why l have never been offered another. As there is nothing they can do about it - l suppose they think its a waste of time/money.

F.

Hello, just wanted to say it seems to depend on where you live regarding mri scans as I was diagnosed with my first scan back in 2006 and I’ve just had my 2nd scan on March 21st this year. Waiting for the results as I think my lesion count may have at least tripled in the 12 years since my 1st scan.