For many people living with multiple sclerosis (MS), the relationship with magnetic resonance imaging (MRI) is complicated. This imaging tool can be helpful in determining how quickly the disease is progressing in the nervous system, but can also give complicated results.

We turned to our community members to learn more about your experience with MRIs. We asked followers of our Facebook page to answer: “When are MRIs useful and when are they not?”

More than 50 community members responded, and here is what was shared.

“My MRI showed little change in over 30 years.”

Many in the community shared that MRIs do not provide enough data to be conclusive. Others explained that the doctor reading their MRI was not able to get precise data from the results. After undergoing multiple scans, many community members made the decision that MRIs are not worth the money, time, and energy they require.

“My MRI showed little change in over 30 years, but I went from RRMs to ProgMs in the last 3 years.”

“I have had tons of MRIs. I have a few lesions. They have been unchanged for years. I have got a few in the corpus callosum. That was not enough for a diagnosis for the first few doctors.”

“My first MRI was normal.”

Perhaps surprising is some community members shared that their MRI tests actually stood in the way of getting a proper diagnosis. Their MRI results came back normal, which led doctors away from an MS diagnosis. Unfortunately, this made it take far longer to ultimately get treatment.

“My first MRI was normal. So, it has been years of ‘Well, that sounds a lot like MS… oh, but I see your MRI was normal.’ Had a horrible flare-up bad enough to send me to the ER during a pandemic. ‘Have you ever had an MRI? Oh, it was normal?’ Was supposed to get a new one if things got worse again, but obviously, everything is on hold now. So, my one normal MRI years ago leaves me in limbo as I get worse.”

“All kinds of MRIs were all negative for 5 years. Stopped doing MRIs because I could not afford them.”

“My experience with MRIs has always been positive.”

For some members of the community, MRIs are reliable. They shared that their tests offer useful information for them and their care team.

“My experience with MRIs has always been positive. I am usually asleep before the door closes behind the tech.”

“The problem I just ran into was gadolinium toxicity.”

A debate regarding the safety of repeated use of MRIs with contrast exists. A chemical called gadolinium is used in the contrast dye, and repeated exposure can lead to a buildup of the substance, which some people believe causes negative effects. Those worried about gadolinium toxicity can minimize the use of contrast by talking with their doctor and requesting MRIs without contrast whenever possible.

“I have had way too many MRIs over the last 30 years, not all for MS. Probably close to 20. The problem I just ran into was gadolinium toxicity, and I am getting zero guidance even from neurology. My levels are in the 97 percentile, which is considered very dangerous. I cannot do anymore contrast.”

“Go to the same imaging center each time so when they do the comparisons, it is the same machine.”

A number of community members highlighted the importance of consistency. They suggest that when possible, rely on the same MRI center and even the same machine to get results that are comparable from year to year. However, it is important to note that this cannot guarantee a conclusive result.

As several of you pointed out, a good doctor will not rely on just MRI results. Instead, they will take the time to ask about the symptoms that indicate an MS diagnosis is present.

“For my last MRI in November, the doctor who read it stated that I had a lesion on my cervical region that ‘could possibly’ have been there before. I was frustrated because I have done all my imaging at the same place to avoid this.”

“A few things to remember: First, do whatever you can to go to the same imaging center each time so when they do the comparisons, it is the same machine. Secondly, if you CAN get an MRI in a 3telsa machine instead of a 1.5, it will show more detail. Lastly, remember lesions can show, but be ‘surface’ lesions at first. Meaning they are not deep, but over time and age those nerves that ‘demyelinated’ can go deeper in the same spot and cause more damage and ‘short-circuiting.’ And lastly, an MRI is flawed just like many other tests. It is not perfect. Our clinical symptoms say a LOT more about the course of our disease.”

Thank you to everyone who shared their experiences on this topic. We recognize this is a complicated issue, and we are grateful to everyone who weighed in.

Editor’s Note: An earlier version of this article stated that repeated MRIs could be a cause of concern for people with MS. The article has been amended to clarify that most concerns are around MRIs using the contrast medium gadolinium.