No MRI Change but Worsening MS Symptoms
Last updated: March 2023
You’ve just had your yearly MRI and there have been no changes, no new or larger lesions; however, you know your condition has worsened since your previous exam.
Understanding worsening MS symptoms but no MRI change
What’s going on? How is that possible? These are common questions and it’s a scenario that many people with multiple sclerosis go through at some point in their life with the disease. While the MRI is a key diagnostic tool for diagnosis and monitoring MS progression, it does not always paint an accurate picture of what’s going on. So let’s talk about some reasons your condition is worsening but your MRI isn’t showing it.
Flares can be deceiving
A key fact about MS that a lot of people don’t seem to understand is that the disease causes damage that cannot be undone. The term “relapsing-remitting” often gives people the impression that they will have an exacerbation (aka relapse, aka flare-up) but then return to normal when it’s over. That may often appear to be the case, as inflammation does go down, but irreversible damage has still been done.
The disease caused your immune system to attack and eat away at the lining around your nerves (myelin) which interrupts the way the brain communicates with the rest of your body. The immune system conducts this attack by using inflammation.1
Consider previous damage
When an exacerbation is over, the signals may again cross along the damaged nerves with no issue (which will look like everything is back to normal), or they may not. One reason for that is that the inflammation (which also slows these signals) that came along with the exacerbation is now gone.1
The brain is also very good at working around damaged areas, re-routing signals to use the best path, which is another reason people may seem like they’ve fully recovered. Those damaged areas are still there though, so you may feel like your symptoms are worsening, but there will be no new change on your MRI because it is really just previous damage that is rearing its ugly head.
There is such thing as silent progression
There are many folks with MS that don’t have a lot of noticeable relapses but over a long period of time end up incurring significant levels of disability. This can happen so gradually that the patient may not even notice it at first. This is often referred to as “silent progression” and isn’t marked by noticeable relapses and lesions on an MRI.2
Instead of the inflammation that comes with a relapse, it’s thought that the real culprit here is actually brain atrophy. Silent progression is something that is normally noticed in those that have previously been diagnosed with relapsing-remitting MS. Another term you may hear for this is “PIRA”, which stands for progression independent of relapse activity. This type of slow, not always noticeable, progression is something a lot of folks don’t think about. There is a tendency to be wary of relapse-type events when there are other ways this disease can affect you.3
Other MRI considerations
If you are still having noticeable issues and your MRI looks normal, you should always ensure that your MRIs are of both your brain and your spine, no matter what your previous history has been. You may have only had lesions in the brain in the past, but suddenly one is in your spine.
Also, make sure the person reading your MRI is experienced enough to know what to look for. My point here is simply to never become complacent in your care. A doctor who may have been skilled enough in your first few years may no longer be able to help you now. Never feel bad about seeking another opinion and advocating 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!
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: