One of the hardest parts of living with multiple sclerosis (MS) is feeling like doctors do not fully understand or appreciate the extent of your symptoms. This is especially true if they consider only your MRI results. Sadly, this experience is common. Many people living with MS have worsening symptoms even when their MRI results stay the same.

To find out more, we reached out on the MultipleSclerosis.net Facebook page. We asked community members, “Have you ever had an MRI checkup that showed no noticeable changes, however you felt as if your MS was worsening?”

Nearly 400 community members responded! Here is what they shared.

Many feel frustrated and confused after doctor appointments

Many people shared that they felt frustrated and angry when talking with their doctors after having an MRI scan that did not match what they were feeling. They said their neurologists do not trust that they are telling the truth when they report symptoms that do not appear to have a cause on an MRI.

The result is that people with MS often leave their doctor appointments feeling confused. They may start to question their own perceptions and experiences.

“My last MRI looked stable and I had no new lesions, so my new neurologist advised that my MS is ‘very mild.’ I could barely see him as he made this comment, as I was having vision issues at the time. It is so frustrating!”

“This is what frustrates me! Nothing new comes up on the MRI so it is assumed that all is fine!”

“So frustrating. I even hate to call the doctor because I question myself when he tells me otherwise.”

Others trust their self-knowledge above all

It can be challenging to hold firm in what you know when your doctor is not allowing much room for you to share what is true for you. But each person is the primary expert about their own body.

“The doctors assume because they do not see changes that nothing has progressed. Then comes the talk of, ‘Well, it could be this.’ I know my body. I know when something is not right.”

“At the beginning, it concerned and confused me. Now my attitude is that I know MY MS better than any doctor. If I feel it, it exists.”

There is more to a checkup than an MRI

Through time and experience, many people living with MS have learned to put limited trust and faith in MRI findings. The technology is capable of finding only one piece of the puzzle, especially when it comes to current damage and symptoms.

“This is why a doctor should not solely go off of an MRI. There are things changing in the body that cannot always be detected.”

“MRI shows past damage. It does not show what is actually presenting.”

It is common to change doctors

Several people shared that when they realized their doctors were not listening, not taking their concerns seriously, and not addressing their issues, they switched doctors. If circumstances allow, this can be easier than trying to convince a doctor that your pain and symptoms are real.

“I used to have a neurologist early on that said according to my MRI, I should have no cognitive issues. I left her because if you cannot believe what I am telling you, then I cannot work with that.”

“Your neuro is not being good to you if they do not recognize that increased disability or other issues can happen without new disease activity. It took me 8 years and 3 neuro doctors before they told me. I recognized that this is common.”

Lots of people felt validated by this question

Members of the community also shared that they felt validated to see this discussion on Facebook. It was only when they learned that others also deal with this situation that they felt comforted. Now they know that they are not alone in struggling to convince their doctors that their symptoms are real when their MRI shows no change.

“I appreciate that this question was asked, and I appreciate all of the people who have answered because it helps me feel validated and less crazy for feeling worse even though my MRI has stayed the same.”

“Wow! These responses are amazing, and I am in such agreement! How many times have I spoken with my neurologist, and never felt heard! Maybe someone should educate these professionals when they are so quick to dismiss our symptoms when the MRI does not show what they consider active disease!”