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Posted: Fri Sep 03, 2004 8:21 am Post subject: No correlation between MRI and disease progression
At a consultation with my Nx last week, the first since a lumber puncture confirmed me having MS, I naturally asked about what was the procedure henceforth - how often would we meet, discussion on DMDs etc, and when would I next have an MRI. As to the MRI he said no more unless he thinks my condition is getting rapidly worse because he said there is no correlation between what can be seen from an MRI and disease progression.
Joined: May 26, 2004 Posts: 1383 Location: London, ON, Canada
Posted: Fri Sep 03, 2004 10:39 am Post subject: Re: No correlation between MRI and disease progression
John,
Your doc is absoutely correct about the lack of correlation between lesions and symptom/ disease progression. That is why MRIs, while important, are not solely used to diagnose MS.
One can have many lesions and few if any symptoms or only a couple of lesions and severe symptoms.
As some people on this forum have stated, what use is it if you have an MRI that shows very little but are terribly disabled by your symptoms.
Yep, he is correct. While conventional MRI certainly aids diagnosis the correlation between disability and the volume of white matter lesions on an MRI is extremely weak.
Interestingly recent cross-sectional studies have shown a 'moderate but significant correlation' between brain or spinal atrophy and disability but this is on more advance MRI techniques.
See http://jon.sagepub.com/cgi/reprint/14/3_suppl/27S for details. The authors believe these longitudinal studies solve the MRI paradox which has 'limited the perception of the role of MRI as a disease biomarker'
fMRI certainly can monitor disease activitiy and progression. Possibly also magnetization transfer (MT) imaging. These can identify lesion location and 'likely' symptoms at a much more sophisticated level.
And the chances of having such a scan in the UK. About zero!
I really wouldn't worry too much about it. Concentrate, if you can on the here and now - not what might happen.
Let me know if you want any pointers on dealing with neurologists in the UK, I think I'm getting it down to a fine art now!
Best wishes,
Felly
Last edited by Felly on Fri Sep 03, 2004 10:57 am; edited 2 times in total
Joined: Jul 28, 2004 Posts: 128 Location: Michigan, USA
Posted: Fri Sep 03, 2004 10:54 am Post subject: What ARE we really looking at?
MRI is a wonderful imaging tool! This is just an opinion but...based on what my Neuro has told me, what I've read here and at research paper sites, literature regarding all the DMD's, I'd have to say " nobody really knows EXACTLY what MRI's are showing you regarding MS and progression. Sure, I know the explanation of MRI and when lesions intensify with dye but! When someone doesn't have ANY MS symptoms and an MRI shows spots what do the spots mean. You can't tell me it's just because they're in an area of the brain that isn't causing clinical symptoms. Why then when spots reduce or disappear don't the symptoms? My neuro. tells me that when the spots diminish or vanish, that means the BBB in that particular area has repaired, strengthened, closed up, whatever you'd like to call it.
One last thought...All the DMD's available, at least here in the US all have the disclaimer "The exact relationship between MRI findings and the clinical status of patients is unknown"
Thanks for the opinions chaps (? Felly not sure of your gender).
I'm a little suspicious of the Nx in our locality - I believe also his research area is nvCJD so MS is a sideline - claimed not to have heard of Prof Swank!
I guess when I say I want to know what the clinical procedures will be it is me trying to take control a little bit more. I dont mind partnerships and indeed need them right now but I want to be more than the patient!
Felly, you're the third person in ten days to give me the same tip: Concentrate, if you can on the here and now - not what might happen I'm sure you're all right. But for me at 50 quite used to managing life and its consequences, just 8 weeks into a dx and still able-bodied I want to do as much as I can for me while I can*, part of that is taking control and part of taking control for me is planning.
When I do think about the future I do get emotional and scared (this site in particular has helped me as I come to terms with things) but knowing I have a number of contingencies makes prospects seem managable so less frightening.
Thanks again. John.
* Unblocked the main drain from our house yesterday - the benefits of being a householder are sometimes exagerated!
Posted: Sat Sep 04, 2004 4:23 am Post subject: Re: No correlation between MRI and disease progression
HarryZ wrote:
John,
Your doc is absolutely correct about the lack of correlation between lesions and symptom/ disease progression. That is why MRIs, while important, are not solely used to diagnose MS.
One can have many lesions and few if any symptoms or only a couple of lesions and severe symptoms.
As some people on this forum have stated, what use is it if you have an MRI that shows very little but are terribly disabled by your symptoms.
Harry
In MHO there can be disease progression with out visible symptoms. Lesions can accumulate that at first cause no problems but later on hit you like a ton of bricks.
A good friend of mine went 10 yrs between mri's and showed no sign of having ms. He had his first exacerbation in those 10 years last year and was surprised by the results of his mri. Instead of the 3 lesions he had 10 years earlier he said his brain, neck and spine looked like a christmas tree with all the lesions.
This exacerbation of a year ago ( he's had none since) knocked him out of the game. He can barely get around now and is mostly homebound. In his case he had a major accumulation of lesions which I would call disease progression with no sign of symptoms.
Thanks for the opinions chaps (? Felly not sure of your gender).
I'm female.
I'm a little suspicious of the Nx in our locality - I believe also his research area is nvCJD so MS is a sideline - claimed not to have heard of Prof Swank!
You would be suprised how many neurologists have not heard of swank or any other treatment that doesn't fall into the orthodox categories. Not being an MS specialist makes it even more likely they will not have this knowledge.
I guess when I say I want to know what the clinical procedures will be it is me trying to take control a little bit more. I dont mind partnerships and indeed need them right now but I want to be more than the patient!
There is nothing wrong in wanting to know what the procedures will be, its a good idea to find out as much as possible. I suggest you have a look at the guidelines on the UK MS society site, which have 'supposedly' been issued to all GPs in the local health authority area, as well as neurologists
http://www.mssociety.org.uk/docs/NICE_A4_guideline_8.pdf
These are the clinical treatment guidelines and will give you an extremely good idea of what procedures should be in place. For example have you been appointed an MS nurse, have you been offered counselling?
Felly, you're the third person in ten days to give me the same tip: Concentrate, if you can on the here and now - not what might happen I'm sure you're all right. But for me at 50 quite used to managing life and its consequences, just 8 weeks into a dx and still able-bodied I want to do as much as I can for me while I can*, part of that is taking control and part of taking control for me is planning.
Contingency plans are important and so is feeling some control but there are some things in life you do not have control over and often the hardest thing is admitting to this, working out what you can control and concentrating on these things. Believe it or not this can be quite liberating and can take a lot of pressure and guilt away.
* Unblocked the main drain from our house yesterday - the benefits of being a householder are sometimes exagerated!
Tell me about it. I'm sort of unblocking the gutters today ready for Autumn (well actually supervising would be a better term to use) today!
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