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Decision to make - not sure what to do

Hi

First time poster but I have a question I think only you guys can help me with

I have had my diagnosis now for over 11 years and been on Copaxone for over 10 of those.

I have been absolutely utterly blessed with a benign course of the disease and in most areas have lived my life unaffected by MS. The nightly injection is such a routine now it has no impact on my life - sometimes I even have to check to see a wrapper in the bin if Ive forgotten if I have done it or not. My symptoms are so negligible as to almost forget I had anything wrong in the first place

Note the word “almost”

I had my annual check up today with my neurologist which was as routine as usual but he floored me with a question at the end. He asked me if I wanted another scan to see how things looked

I have no idea what to do.

Do I do it and find out that while I think I have been free of progression and things in fact things have moved on a lot but it just hasn’t presented as a physical symptom

Or

Do I just carry on not knowing what has happened in the last 10 years

What do you think?

It’s a tricky decision isn’t it? I’ve never had another MRI since diagnosis in 1999. My thinking is that I’ve been on Betaferon for about 11 years, not had a relapse for the last three years and very few mild ones before that so what’s the point? If anything has changed I don’t need to know about it and would only worry. There’s nothing I can about it so I’d rather not know.

Of course, that might change at any time in the future if I need to change DMD or for any other reason but for now I am happy to stay in blissful ignorance!

Thanks for your opinion Val That’s exactly where I am in my thinking If I don’t know then why burden myself I asked my neuro what he thought. He is a very honest man He said “it will help me understand your condition better and be able to treat you more effectively as it gives me the right information” Which at the time I kind of agreed with but now on reflection it is down to me really

Well, that is another way of looking at it. This means it is for his benefit, not just for yours so that’s a bit different.

I would probably have one if my neurologist said that, as long as I could stay on my current treatment if I want to.

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Hey dude. I was diagnosed back in 1996. I also have been lucky that not much has changed since, though symptoms got a little worse a while back with depression brought on thru work. Went to see doc, to Neuro, who was obsessed with my bladder, but he did order another scan. Saw a different dude (thank crunchie) after I had it (months between the above), and he said not a lot had changed. I didn’t take him up on the offer to see as it all turns my stomach. … stoopid I know, but can’t do it. I go queezie during news reports ffs ! Anyways, good luck with your decision. Don’t see why it should change your meds if they’ve been working for you. Take care, Andy

Hi,

I’m firmly in the “don’t want to know what I almost certainly won’t like” camp, I’m afraid. Especially if I think I’m doing well, and my neuro thinks I’m doing well.

I am sure, five years post diagnosis, there would be new lesions. I think this is only to be expected, with or without DMDs.

​However, as long as I’m feeling OK in myself, I don’t really want to be confronted with the direct evidence. I almost feel that if it did show a lot of new lesions, I’d suddenly start feeling worse, just by becoming aware of them - a psychological thing, rather than symptoms they’re genuinely causing.

I suppose I could get a pleasant surprise, and find things have not been as active as I imagine, which would be reassuring - but in general, I don’t seek information if I probably wouldn’t like the answer.

Last time I was MRIed as part of diagnosis, I was told there were “a few” new lesions (sufficient to diagnose), but not how many. I drew my own conclusions that I probably wouldn’t like to know how many, so I didn’t ask.

Five years on, I’m still minimally disabled, so I don’t think I would have benefited from monitoring numbers. I probably would just have been scared and upset by them, instead of concentrating on the fact that, five years in, my neuro thinks I’m doing really well! I know there’s still damage going on - there has to be, because MS doesn’t just go away! But I don’t feel I need an update on it - especially if there’s been no major change in how I feel or what I can do.

Tina

I am usually in the ‘if it ain’t broke, don’t fix it’ camp when it comes to medical investigations that are not strictly necessary.

However, neurologically speaking, we already are broke! And for me, that feels a bit different. If you have MS and are on the neurologist’s books and receiving a DMD, it is probably polite to meet her/him half-way and have a scan if asked to. :slight_smile: But it’s up to you, of course.

Alison

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I go along with everyone else. Don’t just have the scan just for your neurologists benefit. But then I’ve had any number of MRIs over the years and I’ve only very rarely been told any results from them. Many people seem to be told there are X number of new lesions since last time, I have no idea how many more lesions there were on each MRI. Often I’ve wondered what’s the point, but have gone along with whatever he wants.

Plus, relapses do not necessarily mean lesions, and disability also does not necessarily correlate to lesions either.

Basically I think this means I don’t understand the point of MRIs as a diagnostic tool with regard to MS. Having new lesions may or may not make a scrap of difference to the way you are treated. So from that perspective, my opinion is essentially worthless!! (I’ve come to this realisation whilst writing this and nearly gave up answering but decided to post anyway! I suspect that there are other people who have a similar non-understanding of the value of MRIs)

Sue

Hi

I’m obviously too nosey. I’m booked it for another one this will be my third. I’m going through a relapse and that’s why i’m having one. Usually I have minimal symptoms but as I can’t walk at the moment i’m kinda peeved off.

Just before my 2nd, the MS nurse was telling me of a patient who had lots of lesions but hardly any symptoms but another patient only had 1 lesion and was severely disabled.

I never found out the results of my last one, probably nothing changed but the Neuro never volunteered the information and I never asked.

Do what you feel is right for you. Good luck x

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I am blessed / burdened by being a pragmatic bugger.

My initial thought was ‘ignorance is bliss’; if there is nothing negative occurring with your current condition, then why invite a cause for concern? This is especially true, if a less than perfect image would give you anxiety and something to negatively fixate upon.

I am of the conviction that a positive attitude is half the battle with MS, especially as my relapses seem to correlate with periods of prolonged stress. An MRI is therefore something to help one on towards a path of improvement perhaps reactively, as opposed to proactively satisfying the data collecting urges of a neurologist.

But then, neurologists are scientists and the only thing better than data, is more data. Presumably your DMD intake has been as consistent and stable as your MS symptoms? You therefore make a fine guinea pig!

Despite it all, you might be tempted to go for it anyway. You could have your photos taken but request to NOT be told of the result, unless a gathering storm might be averted. ie. no news = good news.

In any event, one of the wonders of MS, is that you could have a dozen lesions with few if any symptoms; or many symptoms with barely a scratch on your myelin. And so who cares in the first place?

If all else fails, you could toss a coin. heads i win, tails you lose. :slight_smile:

Good luck in your deliberations!

My guess is that the neuro is either wondering if indeed you do have m.s.

Or he/she wants a scan of someone who has been on copaxone for ten years and who has not had any deterioration in their physical condition. This may be for is/her own research.

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I’ve just had an MRi with contrast in preparation for my meeting with my Nero on 08/09 as I instigated the process in preparation for my meeting to discuss DMD’s, given the new NICE guidelines as I’m currently not on any meds (diagnosed in 2005). I too have been blessed with this disease having minimal impact on my life. Today i have received a copy of a letter from my neuro to my gp with a brief report of the scan, advising of 2 new lesions since 2012. However, I’ve recently suffered a relapse which impacted on me with my walking and for what ever reason it didn’t show up as recent damage! Its confirmed that this disease is progressing and being forewarned is forarmed. I am now looking at all my options ready for my appointment. I guess what I’m saying is if you need to know for whatever reason go ahead and have the mri, but will it change what you’re doing. My MS has been mild and I have collected new lesions without realising, but I wanted the scan to help the Neuro make the right decision in helping me to choose the right DMD’s. Good luck with your decision. Sharon x