Getting Diagnosed With a Normal MRI
Over my years here, one of the most common types of questions we encounter is from someone who has not been diagnosed but seems to be exhibiting many symptoms of MS. Many times, they’ve even had doctors tell them that it looks like it’s MS, yet they still don’t have a diagnosis. The reason? Their MRI appears to be normal. With MRIs being such an important tool for diagnosing MS, having a clear MRI will make it difficult to get an official diagnosis. So, what is happening here and what should someone do in this situation?
What type of MRI did you receive?
I’ve run into so many people that have had MRIs of the brain that look normal but eventually get an MRI of their spine and find lesions there. So that should always be a question: “Did they order an MRI of both the brain and the spine?” Many times, if someone has MS and their brain MRI is normal, a lesion can be found on the spine.
MRIs are not the only tool
While MRIs are important, they are not the only tool that should be used when trying to diagnose multiple sclerosis. Doctors will also want to look at your cerebrospinal fluid using a spinal tap (also known as a lumbar puncture). They do this to see if there is the presence of particular proteins called oligoclonal bands. If these proteins are present, that's a good sign that your body is having an abnormal immune response, as would happen with MS.1
Another test they run is to look at your evoked potentials. This test is used to measure the electrical response to various stimuli, basically to see if signals are traveling along your nerves properly.1
Making an MS diagnosis really involves looking at the results of all of these exams, coupled with your patient history and symptoms. It’s not only looking at an MRI. There is no one test that can determine MS.
Quality of care matters
Let's face it, not all doctors are created equal. Not every doctor is able to accurately diagnose multiple sclerosis. MS is a disease for which breakthroughs are constantly happening. The book on how to diagnose and treat MS is always being updated. Just in my life, I’ve seen so many changes in what is understood about this disease. So, you really need a doctor that is up-to-date on the latest trends and information that is out there.
You can start by making sure you see someone who specializes in MS. Even then, they may not be helpful and you will need to seek another opinion. Finding an MS specialist that is associated with a university is often a good approach. With not one test capable of diagnosing MS, a capable doctor is much more important than it is with other diseases.
Who’s reading the MRI?
In my experience, some of the best MS doctors don’t even look at the MRI report but read it themselves. Not every doctor can do that, it’s a specialty. While most of the people writing the report are great, you may have someone who looks at the MRI and doesn’t have the experience to pick up on what MS looks like. So that quality of care I mentioned before extends to the MRI center too. Is your doctor looking at a report of the MRI or the actual MRI itself? In my experience, many of the best MS specialists look at the actual images and not only the report.
A normal MRI with MS symptoms
There are rare cases where someone can have MS but their MRI will look clear. This happens.2 That doesn’t mean they can’t get a diagnosis of multiple sclerosis, but it does make it significantly more difficult. It requires the doctors to really eliminate a lot of other potential diseases and it takes a doctor who’s had significant experience with the disease.
Advocate for yourself
The most important advice I can give is to keep seeking other opinions and to keep advocating for yourself. To get a diagnosis, you sometimes have to fight like hell for it. You will run into doctors who either don’t believe you or are simply overmatched by your condition. When that happens, move on to a new one. Do not let them make you doubt yourself, remember to fight for yourself.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
How often do you use assistive devices to help manage your MS?