Forum

MRI Scan

Last time i had an Mri scan was in 1998, never been offered one since, had many relapses in 14yrs, and now struggling alot, and i mean a lot. How can i get another MRi scan done? If my ms nurse doesnt feel i need one, i feel im just being fobbed one as asked for one 2yrs ago too, and then got a bit better, now struggling a lot. any advice appreciated, thanku…

how many mri’s have u had, and how did u request them?

I’d agree with Tina and your MS Nurse, apart from some treatment options, an MRI is a diagnostic tool so there’s not much point in having more once you’ve been diagnosed.

I’ve only had the one back in 1999, I don’t need to have another one, unless I change from DMDs to something else and its a requirement then.

I’ve had many relapses so probably have many more lesions but the MRI won’t tell me any more than that.

Hello, ~I’m sorry to hear you’re struggling a bit at the moment. All the MRI scan will do is show your current lesions. The best evidence is your physical condition. Try to make a note or record of your difficulties and present this to your nurse or consultant. I’m afraid they won’t be able to do much about it-that’s the way it is! I hope you have a helpful family and friends because they provide the best help for our condition. Sorry I can’t give any more help.

Best wishes, Steve.

Hi,

What do you hope to achieve from having another scan? It isn’t normal to have them either on request, or routinely, just to see how it’s doing. They are mainly used for diagnostics, but ocasionally if a change of DMDs was being considered, as some of the second line ones require MRI evidence, to check if you fit the criteria.

Are you being offered DMDs for the first time, or being considered for a switch? If neither is true, then like your nurse, I can’t really see why you need an MRI, sorry. To do what with? If it wouldn’t affect your treatment, what useful knowledge would it provide?

Tina

I’ve not had one since 1994 and what would it achieve by having another? I’ve had more relapses than I care to remember :frowning: dont need a MRI to re-confirm my MS

I did have a second MRI scan last year, but that was at the request of my neurologist, not me.

My original MRI was in 2004, following a positive VEP, after which I received my diagnosis.

During my routine visit to my neurologist last year, after examining me, he said he would like to arrange another MRI (if I didn’t mind!!!) as he wanted to make sure there was ‘nothing else going on’ besides the MS!!!

Anyway, when I received the results it stated that the MRI showed changes consistent with MS, but thankfully no other pathological condition was evident!!

I was diagnosed in 2002 and also at the request of my neurologist had a 2nd MRI 2 years ago, all that was found was that the lesions had increased which was something I had anticipated but apart from that seemed fairly pointless.

I was diagnosed after an MRI in 1999. I had another in 2011, to see if I had active lesions because then I would be eligible for Tysabri. I think my local neurologist likes people on Tysabri to have frequent MRIs, so that he can take them off this expensive drug if their lesion load is still increasing. But he never sees me, so I haven’t had to pass this test.

Anyway, I think those are the three reasons for people having MRIs

  1. for diagnosis

  2. to see if one is eligible (by having lots of disease activity) for Tysabri or Gilenya

  3. to see if these drugs are working.

If you don’t need the MRI for any of these reasons, you probably won’t find out anything useful if you have one.

to see if i have somthin else goin on too, apart from ms, i am liein down all day, cant do anythin, my breathing stops, my conscious goes, at times i am not aware of anythin and th only thing that moves is eyes, numbness of whole body, nauseau, too many things which relate to ms, but its the goin unconscious and breathing that worries me the most. My doc was suppose to send me to see neurologist last year to check for epilepsy, but never ever got an appointment. worried i may have a tumour.

Having a scan because something else is suspected is a bit different from having one just because you have MS.

Presumably, you have discussed your concerns with your existing neuro? Did he or she feel there were other things going on, that aren’t adequately explained by your MS diagnosis? Or that it’s all the MS?

And did you go back to your GP to chase about the missing appointment?

If you really do think you have something else going on, that has nothing to do with MS, then your best bet will be to take it up (again) with your GP, as your MS nurse, by definition, isn’t going to arrange investigations for unrelated problems.

However, her view is still important. In her experience, does she feel your symptoms are consistent with MS, or does she agree with you there’s something else going on?

If your current neuro AND your nurse both agree there’s nothing happening that can’t be explained by your existing diagnosis, it’s probably fruitless pressing for further investigations. As others have said, it will just come out: “Yes, you do have further lesions, and that’s to be expected.”

But if your GP thought there was something else in the mix, time to revisit that avenue, I think.

Tina

I’ve had 6 so far - one when I had my first symptoms, then another 2 (head and spine) when I had the second lot of strange sensory things happening these were used for diagnosis. Then after starting rebif I had several relapses in a short period of time and had another MRI to confirm I was eligible for tysabri. I’ve been on tysabri for about 2½ years now and have to have an annual MRI to monitor any changes - so far I’ve had 2. I haven’t requested any of these they have all been needed by the MS team for diagnosis and treatment.

At my annual neuro visit my neuro mentioned that as I am JC positive they may make me have one every 6 months… it’s a good job being in the scanner doesn’t bother me too much.

Hi

I see my nuero annually (just this morning most recently) and he makes it clear if my symptoms change he will do another MRI but I have been stableish for 6 1/2 years now - even though my scan before last showed active lesions when I had no physical signs. He requested I had one last year as my pervious one was 2 years prior and 2 years again before that. Chat to your Nuero about it - they hopefully know best.

Thanku for ur replies all, my ms nurse thinks i have other things going on, so need to go back to the docs to get a neuro appointment, @Anitra I been trying to get an appointment for docs but cannot get one until 2wks, they soo busy, but gettin a phone call from my doc this week. once again thanku…