I know I have MS, even though I denied it for many years. I have had one MRI in 18 yrs, because my doctors feel having another is not going to change anything . . .

Neurology. 2008 Dec 10

MRI as an outcome in multiple sclerosis clinical trials

Daumer M, Neuhaus A, Morrissey S, Hintzen R, Ebers GC.
From the Sylvia Lawry Centre for Multiple Sclerosis Research (SLC) (M.D., A.N.); Technical University of Munich (M.D.); Ludwig Maximilians-University (M.D.), Munich, Germany; Department of Neurology (S.M.), University Hospital of Rennes, France; Department of Neurology (R.H.), University Medical Centre, Rotterdam, Netherlands; Wellcome Trust Centre for Human Genetics (G.C.E.), Oxford University; and Department of Clinical Neurology (G.C.E.), John Radcliffe Hospital, Oxford, UK.

INTRODUCTION

T2-weighted and gadolinium enhanced T1-weighted MRI scans measure plaque burden and breakdown of the blood-brain barrier, respectively, in multiple sclerosis (MS) lesions. These have become widely used outcome measures for monitoring disease activity in clinical trials and clinical practice. However, their use as surrogates or biomarkers for disability and relapses, key clinical outcome measures, has remained incompletely validated.

METHODS:

In a clinical trial database comprising 31 relapsing-remitting and secondary progressive MS trial placebo groups, we assessed relationships between 1) T2 lesion load (TLL) change and disability change and 2) gadolinium enhancement of MS lesions and on-study relapses with univariate and multivariate analyses.

RESULTS:

In relapsing-remitting MS, TLL change (n = 223) made no independent contribution to predicting change in disability from baseline to trials' end. Similarly, inclusion of gadolinium enhancing lesions (n = 170) into multivariate models did not independently contribute to the predictive value for on-trial relapses. In secondary progressive MS, a small effect of TLL was found for disability change (n = 355) but in multivariate analysis this accounted for less than 5% of the variance in end-of-trial disability. Results were replicated in independent datasets, more than doubling effective sample sizes.

CONCLUSIONS:

MRI measures widely used in trials of relapsing-remitting and progressive multiple sclerosis add little if anything independently to the clinically relevant relapse and disability outcomes. These results reemphasize the importance of validating potential surrogate markers against clinical measures and highlight the need for better MRI markers of disease activity and progression.

PMID: 19073945

http://www.neurology.org/cgi/content...916.38629.43v1

Cherie

I think the general idea is not to have one just for the sake of having one, but when used in conjunction with relevant relapse and disability to determine progression , (and yes, for me new disability showed my doc there was a need to switch treatment before I had my last MRI) it can be an important tool.

But it is just that...a tool. Not the end all ,be all of MS diagnosis or treatment. They are only a snapshot in time, what is going on at that very moment. Some lesions disappear and they can take quite a long time to appear in the first place.The lesions may or may not correlate to your symptoms.

All they actually provide you with is an idea of what's going on at the time. So they may help you decide if a drug is not working at the moment , determine that there is nothing beside MS causing a problem or help the doc in diagnosis, but can not predict anything, as I think we all understand. No doctor or test can predict the future here.

Ultimately, you decide when or if you have one.

As of next week, it will be one year since I was diagnosed and had my first MRI (January 4).

I've had 4 MRIs so far....I'm about once every 3 months - though the time between the last two was only 9 weeks as I ended up in a flare and they wanted to see if there was activity, so I went a few weeks early. Part of the HiCy protocol includes continuing the MRIs every 3 months and I'm quite glad as I like to know what's going on up there. Even though it's not reliably a predictor in studies, it seems to be a predictor/indicator in the course of my disease, which is fairly aggressive.

Currently every 6 months, but am hoping that as long as I remain stable it will change to yearly.

I've had six since being dx in 2005. My last one was this past October. I doubt I'll have one again unless it's an emergency because my medical insurance terminates on 12/31. I looked at the bill that was paid by insurance and it was nearly $4,000! Is there a "discounted" MRI plan out there?!

In Canada, unless it's an emergency, MRIs can take months to be scheduled for. ("Emergencies" are quick though ...)

If we just "want" one, like to look for any new pretty lights in our brain, we can get one immediately (through a private clinic) at a cost of about $500 - $800.

How in the heck do they justify charging $4,000??

Whether it is paid for or not, IMHO, having one is a HUGE expense. Can you imagine how much it costs "the system" for something that doesn't really provide any useful information?

But, if you really wanted one, Kelly . . . remember you can fly to Vancouver for about $400, pay about $600 to have one, and enjoy a great holiday with me on the $3000 you'd save.

Cherie

I have had one every six months since being diagnosed. Of course they noticed a glioma, and have been watching that as well. I have one coming up in a couple of weeks, and if all remains the same, or better, I will not schedule another for at least a year. I dont like all that GAD dye being pumped into me either, but when they find things like gliomas, and lesions and so forth, I dont give a cracker how much it costs, I want to know what is happening in my head. I guess I am one of those spoiled by having great insurance, and good MDs who are happy to get the answers we seek. The MRI itself may not be helpful in controlling the disease, but it is helpful in letting us know if our meds are working or if we have active areas lit up. I am happier for the knowing, and would have been incredibly stressed playing the guessing game.

I looked at the bill from the last one I had in Jan., 2008, and it was nearly $4000 also. I no longer have the GOOD insurance I had then since going on Medicare. Under 65, cannot afford supplemental insurance to cover what the new insurance doesn't. It all just seems too much at times.

My last MRI, neck, c-spine, t-spine, and L-spine, w/and w/o contrast was billed at a grand total of $10,128 to my insurance company. I about fell over when I saw that bill. Of course, that did not include the $1728 that the radiologist billed to read the MRI.

I haven't received my portion of that ungodly amount yet.

Happy New Year everyone.

I no longer have "good" insurance either. At least not after today.....my insurance coverage with BCBS ends today. I'll have to wait until September of 2010 before Medicare takes over. What's the reason for the waiting period? Anybody know? Hope I'm okay until then!