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When did you last have an MRI?

Hi all

I had my first and last MRI 2 years ago and was diagnosed RRMS (2005 onset) at the next appointment 6 weeks later; i have been on Copaxone for about 18 months.

my memory is getting progressively worse, though I have had no definite (neurologist accepted) confirmed relapses since I started on the DMT I did have two / three weeks of gradually diminishing electric shock pains up the inside of my leg when walking which my neuro didn’t think was a relapse(?).

Do any neurologists offer mri’s to monitor brain health / see how the drugs are working or just if you keep getting relapses? My neurologist doesn’t routinely MRI patients on first line DMTs.

I fear that my powers of memory and communication are getting in the way of relapses being noted, as indeed they did for the first 9 years. Im not good at explaining my symptoms or even remembering them when I have the chance to see a professional I get a bit tongue tied and forgetful. The value of an MRI for me is that it doesn’t depend on the power of communication (he who shouts loudest and longest) to show up disease activity.

Many thanks and take care all

Sarah

Hi there Sarah.

With regards to when & how to remember. I save all the medical letters in a file & have post it notes. I personally chose to try carrying on as normal. Too much waiting around & taking advice from all sorts of different people can cause problems. I have primery progressive so I just go with the flow. Life goes on. It’s not so easy when disabilities start. You’ll get to know & learn your own individual problems. You are in control. Be healthy & enjoy your life.

Thanks Puddle,

I do worry about the future. Work is increasingly difficult with cognitive issues and I’d love to stop but don’t know how I’d manage financially. Life feels without hope and if it wasn’t for my dogs I’d prefer not to be here.

I had an MRI (which I didn’t want) a few weeks ago. It showed that I don’t have PML. It also showed “no new lesions compared with previous scans”. But I have deteriorated a lot - so scans don’t always show what you are experiencing. You need to tell your neuro what is going on for you. Either take notes to your appointment, and refer to them or take a friend to speak for you.

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No pml sounds good news though must be frustrating not to have an explanation for the deterioration. I don’t have anyone I can take with me but I’m forgetting so much it’s hard to have a conversation as I can’t find the words let alone remember what I want to talk about.

Perhaps if you went to your GP to explain your concerns about memory problems, you could ask his advice about requesting an MRI.

As for how many I’ve had, Just the one about eleven years ago when I was officially diagnosed (had symptoms for 23 ish years).

Best wishes

Jan x

Could you keep a diary and then make notes about deterioration, with dates?

Hi Sarah

When you see your neurologist (or any doctor really), work out before you go what you want to ask, make a brief list to remind yourself, get the list out during the appointment and make sure you get all your questions answered.

The problem with MRI as others have said is that they don’t always show up places where you might expect to see evidence of deterioration. Often they can show active disease activity, but sometimes not. Neurologists tend to request MRI when a treatment is changed but not necessarily when they feel a therapy is working. Those who worry about budgets may also be a little wary about routine MRIs as they cost a lot!

In my 19 years I must have had a good 10-12 MRIs. Mostly I’ve had no feedback from them, occasionally a doctor has made some little comment, most recently my neuro said that there was some activity 8 months ago (though he hadn’t said so at the time!) I’ve had more MRIs than many simply because I’ve had more trouble with DMDs than most so have gone on and off various drugs and each time have had an MRI. My neurologist is one of those who requests them fairly frequently, for me at any rate, so I had one when I started Tecfidera 8ish months ago and will have another in about 3/4 months time (as I’m now off the 'Tec)

If you want an MRI, then you can ask for one at your next neurologist appointment, but you need to think about why you want it. If you’re having problems with your memory, an MRI may not show this up, you might be better off asking to see a neurological psychologist.

Sue

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l had an MRI - 33yrs ago for diagnosis. None since for MS - but did have one for torn rotor-cuff/shoulder after a fall.

I had one 6 months ago I think and am due another on Friday.

It seems that cognitive issues are disregarded despite them being pretty disabling from where I’m standing. I think I need to spend time writing down etc what I need to say so I can organise my thoughts. If I don’t get asked the right question I can totally forget. It doesn’t help that I find it makes me nervous and I can’t wait to leave as soon as I’m in there. The nurses are probably my best bet if I have queries. Thanks for your replies.

The kind if disease activity that robs a person of sight/mobility/urinary continence or whatever tend to grab clinical attention more reliably than the kind of creeping sort that you describe - that’s for sure. I reckon that neurologists tend to think a person is doing OK on a DMD unless that person is relapsing all over the place, in which case an MRI will be a matter of confirming what is already clinically obvious. It isn’t routine to scan people who are on a DMD and who aren’t in obvious trouble. All I can suggest is that, if you think you are in MS trouble that isn’t obvious to the neurologist but is obvious to you, keep on saying so. I completely understand your concern about brain health - and I share it on my own account!

Alison