Dual Perspective on Recognizing the Elusive Early Signs of a Multiple Sclerosis Diagnosis

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EP: 1.Dual Perspective on Recognizing the Elusive Early Signs of a Multiple Sclerosis Diagnosis

Early signs and symptoms of multiple sclerosis (MS) can be subtle and varied, often leading to initial misdiagnosis or delayed recognition. These may include visual changes, numbness, fatigue, or mood-related concerns, which can be mistaken for more common conditions. To reach an accurate diagnosis, clinicians typically rely on MRI imaging and other specialized tests to rule out alternative causes. Once MS is identified, shared decision-making between the patient and clinician may be essential, aiming to guide individualized treatment strategies and support long-term disease management.

In collaboration with National MS Society, NeurologyLive^® held a roundtable discussion with an MS expert and patient living with MS who talked about the early signs of the disease and the impeding challenges that can delay diagnosis. The featured guests included neurologist Ellen Mowry, MD, director of the Multiple Sclerosis Experimental Therapeutics Program at John Hopkins Medicine, and Nicole Boschi, PhD, director of regulatory affairs at the National Multiple Sclerosis Society, who spoke on the importance of patient-clinician collaboration in navigating care and treatment planning.

In this first episode, Boschi and Mowry discussed the often subtle and misattributed early signs of MS. Nicole recounted her experience with persistent visual disturbances and nonspecific symptoms like anxiety and fatigue that preceded her diagnosis. Mowry then explained the diagnostic challenges clinicians face because of the heterogeneous and sometimes silent presentation of MS lesions. The discussion highlighted the importance of clinical vigilance and early imaging when unexplained neurological symptoms emerge, particularly in younger adults.

Transcript edited for clarity.

Isabella Ciccone, MPH: Thank you both for coming to this discussion to talk about the patient journey with MS. And Nicole, it seems you're still early on your journey. So, we can get started with some of the questions I have here. Nicole, if you want to start us off—what did early symptoms or signs look like for you? What were they initially attributed to, if not MS, in your experience?

Nicole Boschi, PhD: I think the first thing I noticed was a change in my vision. I was having problems with depth perception, and I went to an ophthalmologist. I talked to her about it and also told her that I’ve had depth perception problems since I was a kid. So, she took a look at me and thought that I had strabismus, but she doesn’t treat strabismus, so she sent me to a pediatric ophthalmologist who could treat the misalignment of my eyes. I went to her, and she prescribed prisms for my eyeglasses, and that helped but things still weren’t right, and we couldn’t figure out why. That was last summer.

Fast forward to this fall, my husband and I were going on vacation, and the day before we left, I started having double vision. At first, it went away, and then by the next morning, it was constant, and it lasted for 3 months. So as soon as we got back from that vacation, I made an emergency eye appointment. They were about ready to do eye muscle surgery, and at the last minute, they said, “You should go for an MRI. We’ll do your brain and your eyes. It’ll give us information on the surgery and just make sure there’s nothing else going on.”

Well, that MRI came back, and I immediately saw “suspicion of demyelinating disease, MS.” So I emailed Dr. Mowry because we had met at a previous event in DC. And yeah, that’s where my journey with MS began.

Isabella Ciccone, MPH: I guess this is a great lead-in to you, Dr. Mowry, about, what early signs and symptoms look like and what patients bring to you. I’m sure you hear a lot from them about what previous providers, or even primary care doctors, initially thought they had.

Ellen Mowry, MD: Yes, definitely. MS is known for presenting uniquely in some ways in each individual, so there’s never a story that’s exactly the same as somebody else’s. And that’s what makes each person’s journey unique.

The interesting thing is that, because MS damage can occur pretty much anywhere in the brain or spinal cord—we know, for example, that the optic nerve, which brings back vision, is part of the brain—those spots can show up in any location. Sometimes areas of activity from MS are actually silent, and people don’t know they’re occurring at all. Other times, they occur in an area that creates a specific pattern of symptoms.

So it can be really tricky because various people have different things. And with spots in different areas, the symptoms may vary in severity as well and can last for varying amounts of time, sometimes recovering completely. So somebody finally gets in to see their doctor and says, “Double vision—but it’s gone,” and it doesn’t really rise above the radar as something suspicious for that physician. So it can be a really challenging thing.

Very common symptoms that people think of as classically related to MS are things like a person who’s on the younger side—maybe in their 20s, 30s, early 40s—and they develop, say, numbness that over a few days goes up to the level of their waist, and then gets better. Or weakness and heaviness in the legs that gets worse over several days and then gets better. That sort of thing. Loss of vision in one eye—gradual loss of vision, pain when they move their eyes around. Or things like double vision—not double vision that sticks around when you close one eye or the other, but really that’s present with both eyes open and, again, typically lasting for days but can fluctuate. Some people just sort of notice a little overlap or don’t describe it as quite “double,” so it can be really challenging.

Interestingly, there are a lot of data coming out showing that people with MS, even prior to that first definitive set of symptoms, probably aren’t feeling quite right for several years leading up to their very clear onset symptoms. That’s an area of active research. You can see, for example, in places that track doctor visits, people just start going to the doctor saying, “Not feeling right.” They may have increased anxiety or depression—and I mean, those are really common health problems anyway. So how do you pick up: oh, this person’s anxiety, or depression, or exhaustion seems like a red flag for something more specific, like MS, versus just garden-variety anxiety and depression? It’s really an overwhelming task.

Nicole Boschi, PhD: Yeah, and that totally happened to me. I wasn’t feeling right for about 2 years before the MS diagnosis, and I didn’t know why. Things would come and go like increased anxiety, depression, increased fatigue and I didn’t know why I was feeling those things. I had no idea what to attribute it to.