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 āalmostā
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 hasnāt presented as a physical symptom
Or
Do I just carry on not knowing what has happened in the last 10 years
Thanks for your opinion Val Thatās exactly where I am in my thinking If I donāt know then why burden myself I asked my neuro what he thought. He is a very honest man He said āit will help me understand your condition better and be able to treat you more effectively as it gives me the right informationā Which at the time I kind of agreed with but now on reflection it is down to me really
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 didnāt take him up on the offer to see as it all turns my stomach. ā¦ stoopid I know, but canāt do it. I go queezie during news reports ffs ! Anyways, good luck with your decision. Donāt see why it should change your meds if theyāve been working for you. Take care, Andy
Iām firmly in the ādonāt want to know what I almost certainly wonāt likeā camp, Iām afraid. Especially if I think Iām doing well, and my neuro thinks Iām 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.
āHowever, as long as Iām feeling OK in myself, I donāt really want to be confronted with the direct evidence. I almost feel that if it did show a lot of new lesions, Iād suddenly start feeling worse, just by becoming aware of them - a psychological thing, rather than symptoms theyāre 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 donāt seek information if I probably wouldnāt like the answer.
Last time I was MRIed as part of diagnosis, I was told there were āa fewā new lesions (sufficient to diagnose), but not how many. I drew my own conclusions that I probably wouldnāt like to know how many, so I didnāt ask.
Five years on, Iām still minimally disabled, so I donāt 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 Iām doing really well! I know thereās still damage going on - there has to be, because MS doesnāt just go away! But I donāt feel I need an update on it - especially if thereās been no major change in how I feel or what I can do.
I am usually in the āif it aināt broke, donāt fix itā 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 neurologistās books and receiving a DMD, it is probably polite to meet her/him half-way and have a scan if asked to. But itās up to you, of course.
I go along with everyone else. Donāt just have the scan just for your neurologists benefit. But then Iāve had any number of MRIs over the years and Iāve 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 Iāve wondered whatās 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 donāt 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!! (Iāve 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)
Iām obviously too nosey. Iām booked it for another one this will be my third. Iām going through a relapse and thatās why iām having one. Usually I have minimal symptoms but as I canāt walk at the moment iām 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.
I am blessed / burdened by being a pragmatic bugger.
My initial thought was āignorance is blissā; 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.
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.
Iāve 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 DMDās, given the new NICE guidelines as Iām 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, Iāve recently suffered a relapse which impacted on me with my walking and for what ever reason it didnāt 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 Iām saying is if you need to know for whatever reason go ahead and have the mri, but will it change what youāre 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 DMDās. Good luck with your decision. Sharon x
But itās up to you, of course.