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How often should you get an MRI ?

Hi,

I got diagnosed in 2003 by a private nuerologist who i had through my medical cover at my job.I got a MRI and he told me that I had Benign MS going by my history.

However I don’t feel as if its the same as it used to be. I constantly battle with fatigue .I lose strenght in my arms / legs regularly and the muscles in my bladder seem to have given up the will to function for days at a time.I have various sensory problems that come and go as they please.Along with cognitaive issues that keep me family amused.

I hate going back and forward to the docs and being told “yes it 's your MS”.The MS nurse covers a whole county with a high proportion of MS’ers and I hate to leave messages on her answering machine constantly.

So basically what I need advice on is .Should I have had another MRI by now and if so who do I talk to to get it done.

Sorry for the rambling and thanks in advance for reading

had MRI in 1999,and no mention of it since,have ppms,so maybe there is nothing else to see,look foward to hearing others

Hi Angela, oh that damn ‘benign MS’ again! I say that because it’s such an odd dx. Technically it’s given when MS symptoms haven’t got any worse over a long period of time… I think the usual is 12 to 15 years, but I’ve read 20 years as well. Then some neuro will come along and give it straight away… making you think that it’s nothing much at all.

I would suggest you go to GP and ask to be referred to a neurologist (that would be the normal first step before MRI), and take it from there. They might want to do another MRI just to see what’s going on, or they might just take it from your symptoms that there’s been some progression.

Depending on what dx they come up with (ie what type of MS you have), there might be a drug that would help, so it’s worth it from that point of view. Also, don’t worry about contacting MS nurse. You have paid into the system like everyone else. You have MS. The service is there for you as much as anyone else.

Hope this helps,

Pat x

Hi Angela,

Post diagnosis, I don’t believe it’s usual to have “follow-up” MRIs, unless it’s to assess how well your DMDs are working.

Part of the reason is that the number of (visible) lesions doesn’t correlate that well with how disabled you are, or are likely to become, so in that sense, it’s not particularly helpful information. MRIs are useful in diagnosis, but limited after that.

As far as I’m concerned, I don’t care if I never have another one. I know I have MS, and I’m sure, over time, it will be busy creating new lesions. Do I want a running count, for me to worry about? No thanks.

I think seeing your MS nurse is probably a more practical way forward than pushing for a new MRI.

Yes, there’s a possibility you’ll still be told: “It’s your MS”. I’d be very surprised if it wasn’t! But she might have suggestions for treatment of at least some of the symptoms.

As an aside, I think a diagnosis of “benign MS” is a bit of a can of worms. Technically, such a diagnosis can only be made retrospectively, after you’ve been symptom free (or almost) for a decade or more. So unless your neuro in 2003 thought you’d already had it since '93, and that it hadn’t caused any trouble in that time, it was probably a bit premature to refer to it as “benign”.

MS, unfortunately, is MS. It doesn’t know it’s been pronounced “benign”, and it won’t stop it playing up if it wants to.

You shouldn’t feel the “benign” label means you shouldn’t have the advice and support of a nurse. Although you’re lucky to have one. I know my NHS Trust has some - I even know some of their names. But I’ve never been allocated one, or offered an appointment, nor has it ever been suggested I should be. I’m not particularly bothered, as I seem to manage without. But if you do have one, I wouldn’t hesitate to leave messages on her answering machine.

Your questionable 2003 diagnosis of “benign MS” doesn’t mean your issues are any less real than the next person.

Tina

Hi Angela

Am 100% with Tina on this one.

Take care.

Ellie x

What are you expecting from another MRI? It’s not possible to link lesions with specific symptoms so suppose it shows more than last time, what will that tell you?

I had one for diagnosis in 1999 and unless they want me to have one in connection with any future treatment/drug trial, I don’t need another one, it won’t tell me anything I don’t already know - I have MS.

I would leave a message for your MS Nurse though - it’s what she’s there for.

I’ve only ever had the one MRI, when they were diagnosing me, 9 years ago. After seeing a lot of posts on here that would suggest that a lot of people have them regularly, I asked my MS nurse if I should be getting scanned again. Basically, her reply was no, because the scans are expensive to do and they won’t really tell them anything they don’t already know, ehich is fair enough. I wouldn’t worry about not being scanned.

Luisa x

Hi Angela,

I had one in 1998 and told benign MS - 5 lesions but very few symproms. Then got probs with my legs so had another one in about 2010. Was never

shown first images but all computerised by 2010 so neurologist showed me them - fascinating. Number of

;lesions hadn’t increased or enlarged so that was some good news.

Think they would only give MRI’s if major changes in symptoms.

Keep well,

Jen x

Hi Angela,

As lots of others have told you the norm is an initial MRI during the diagnostic period and it’s fairly unusual to have another. I think what is worrying you is the lack of intervention. It goes against the grain to have a serious medical condition and no treatment. Such is the way of things with MS. It’s not unusual for MSers not to see a neurolgist for years and if they do it’s for 10 minutes and no prescription. During your MS journey you will experience many and varied symptoms, few of which have a ready solution.
My advice is to use your GP. Don’t expect them to be especially knowledgable – you might be the only MS patient on their books. I tend to research (often using this forum) the symptom in question so that I can discuss/make suggestions with my GP.

This might be a good time to get on an NHS neurologists books so that you will be seen every 12 months or so but don’t expect anything much to happen.

Oh and as for that “benign” diagnosis I’d cast it off if I were you. It’s not helpful. Your MS is was it is and calling it Fred or Mary won’t make any difference.

Jane

I have never had an NHS MRI scan. I payed £800 for two private ones to get diagnosed,had three as part of a drugs trial seven years ago,but they are ‘sealed’ and an MR Venogram in Frankfurt two years ago. This shows how knackered the veinous system in my neck is and cost £1100.A spare £8000 and I’m having the Liberation and a holiday in Poland.The beer is superb,and we like the people.

I don’t know what good an MRI would do me. The NHS would just say,“Well you’ve got MS ,what did you expect to see?”

If I fancied wasting NHS time and money,I suppose I could insist,but what’s the point? At my stage in the game 11 years in I know the NHS have nothing for me apart from Morphine patches, epilepsy drugs and now a small stash of oral 'roids with their good and bad side effects.

Wb

Thanks for everyones comments. You have all helped settle my mind in regards to this .

I’m reassured that I’m not going nuts and I’ll just get more regular contact going with my G.P. and my MS nurse.

Thanks again xxxx

Hi Angela,

I had my 1st MRI in September 2006 along with other tests I was dx in October 2006 6 weeks later I had another 1 following a relapse which left me paralised form the chest down they thought something else was going on I started Avonex in March 2007 but I kept relapsing and they done a few more MRI’s and the lesions and damage was getting bad really fast I was relapsing every 4 or 5 weeks then I was told I had highly aggressive rrms I give Avonex as long as I could till I ended up in a wheelchair I’d another Mri in July 2008 and was told I could start Tysabri which I did in August 2008 I have an Mri every year now for me its interesting to see my Mri’s I hadn’t relapsed since and I’m out of a wheelchair and its really nice to compare Mri’s everyone form before I was dx show’s more lesions but since starting Tysabri everyone shows improvement.

I know and was told it only takes one lesion in the right place to make a big difference on how MS affects you and I wouldn’t be having Mri’s if I wasn’t on Tysabri but you are giving an anual Mri when your on that treatment even some have 1 every 6 months If you test positive for the JC virus.

Mark x

Pretty much all MS starts out as ‘benign’.

It is a cronic degenerative disease i.e. not too bad at the start (usually) and then getting worse over time

Hi Angela From what you describe your MS doesn’t sound very benign. Have you been offered any treatment? And if not is that because they consider your MS ‘benign’? I guess one reason for getting another MRI scan would be to have a clearer diagnosis and therefore to be offered treatment. My diagnosis was made on the basis of clinical symptoms along with an increase in lesions between two MRI scans. If you are not being offered treatment I would definitely ask your MS nurse why not and what they would need to see before they do offer it. Good luck with it, do let us know how it goes with whatever you decide to do? Ed

Hi Angela,

I was diagnosed in 2005 with rrms. I was put on a dmd within 6 months.

i am wondering why you have not been offered a dmd?

I was also diagnosed by a private neuro through work. After all the diagnostic tests i was refered to the nhs ms services at my nearest hospital. From here i had help for all my symptoms. (pain relief/physio for my balance)

I see my neuro once a year as you need to have check ups with the dmd’s. I also have access to two ms nurses who help me inbetween appointments if i have any problems. my gp is rubbish!

Are you not in contact with a neuro? I fear you have been let down.

When i went to see my neuro last year - i saw he had written on my notes ‘benign ms’ even though i was diagnosed rrms. i didn’t take any notice and didn’t question him as i know this really does not feel ‘benign’. I have no trouble walking but have had some awful symptoms. i have ms - no matter what label they put on it and it affects us all in different ways.

I have only had one mri at diagnosis. Even if your ms is benign you should have been offered dmd’s. If not - why not???

Teresa.x

I am glad i am on the dmd - i feel my ms would have progressed further if i had not been on it.

You really need to be refered to a neurologist if you have not got one (you should have had one all along).

He/she will be able to help you with medication/symptoms and if you meet the criteria then dmd’s as well.

Hi

thanks again for all the support and reasurances.Unfortunately I 've not had much time to do anything lately in follow up to all the suggestions.

My Husband had a stroke just after i put up the post completely out of the blue. He is doing well now and thankfully has only been left with slight memory problems and dizzyness ect(no major limb loss or facial damage is what i mean) We are extremely thankful though that the hospital caught it in time or it would have been a major stroke as his blood preasure was so high.

So thanks again for all your advise and hopefully I’ll be able to sort things out with my MS nurse soon .

Angela x