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First off, we get it: Thinking you might have multiple sclerosis, or MS, can be scary. There are more than a million people in the United States who have the condition (plus, its prevalence worldwide is increasing) and the Pacific Northwest region is known for having higher MS rates, in part, it is thought, because people here tend to have vitamin D deficiency.
MS is a progressive condition where the immune system attacks the protective coating over nerve fibers, affecting the brain and spinal cord. Most people with MS get flare-ups where this damage and new or worsening symptoms occur, followed by a period of stabilization.
This is scary, as is the fact that some MS symptoms you hear about, like fatigue or dizziness, seem pretty vague. So, how do you know when to be concerned and when not to? And what should you do if you think you might have MS?
Potential MS signs to be aware (not afraid) of
If you think you have MS symptoms, the first thing to do is try not to panic.
“If you Google your symptoms and see MS on the list, you can get yourself into an anxiety attack,” says Dr. Annette Wundes, a neurologist and medical director of the Multiple Sclerosis Center at UW Medical Center – Northwest. “But there are many other things your symptoms could be caused by.”
MS isn’t a common diagnosis, so even if you have MS-like symptoms, chances are they are caused by something else.
Though there are lots of nonspecific symptoms that can manifest in MS, there are three early signs more specific of MS in particular that Wundes looks for:
- Optic neuritis: Blurry vision and pain with eye movements, typically just in one eye and distinctly different from migraines.
- Lhermitte’s sign: A wave of pain like an electrical shock that moves down the spine when bending the neck.
- Transverse myelitis: Reduced sensation or numbness in the limbs, weakness in the limbs and possibly bladder or bowel dysfunction.
Of course, these symptoms could be caused by other things, too, like an eye injury or a spinal disc injury, to name a couple. If the symptoms last less than 24 hours, they probably aren’t from MS.
But it’s also true that people who don’t have these symptoms may still end up with an MS diagnosis.
“You’ll miss a lot of people if you think this is how MS always presents,” Wundes says.
Other signs of MS can include:
- Fatigue
- Dizziness
- A tingling sensation
- Vertigo or double vision
- Numbness or weakness in the limbs
- Balance or coordination issues
- Unsteadiness or other difficulty walking
- Incontinence or bowel issues
- Difficulty with sexual function
- Cognitive or mood issues, like depression
- Muscle stiffness or spasms
We mentioned how vague some of these are, right? Because, yeah.
“We all can find ourselves on this laundry list of possible MS symptoms at certain times. An MS diagnosis isn’t just about symptoms but depends on how they present, the timeline and in context of more thorough examination,” Wundes explains.
If I have any of these symptoms, should I see a specialist?
Unless you have dramatic, scary symptoms that warrant a trip to the emergency room (like, say, sudden blindness), Wundes recommends first addressing your concerns by going to your primary care doctor.
“They will do a neurological exam and listen to your story, and determine if your symptoms have neurological causes,” Wundes explains. “There are many other valid explanations for blurry vision, fatigue, etc.”
If your doctor determines a referral is necessary, you will meet with a neurologist, who will order a scan of your brain and possibly of your spinal cord, order blood tests and may perform a lumbar puncture to collect a sample of your spinal fluid.
Unfortunately, diagnosing MS can be difficult sometimes, even for specialists. Wundes says she sometimes knows during her first appointment with a new patient, but other times it takes longer.
It’s easy to get worried going through testing. Sometimes test results may seem to point to MS but actually don’t. For example, Wundes says it’s common to have some abnormalities show up in an MRI, and a radiologist may even write “possible MS” in your scan results when you don’t actually have MS.
“The most common reason for misdiagnosis is if you take an MRI with nonspecific or vague findings and diffuse symptoms from the laundry list of early MS symptoms and call it MS, but that isn’t MS,” Wundes says. “You have to see the MRI in the context of specific medical symptoms and situations, and these pieces together, plus an additional workup, may confirm the diagnosis.”
Some people may even have an MS-like condition that never fully becomes MS; this is called clinically isolated syndrome.
What happens if I’m diagnosed with MS?
It is scary being diagnosed with a life-long, chronic disease like MS. However, enormous progress has been made to help those affected by MS, both through medications and non-pharmaceutical approaches.
There are now more than 20 different medications that help reduce the risk of recurrences and nerve damage.
These medications can’t repair existing nerve damage, though, which is why it’s important to get a diagnosis early if possible.
“Even if someone is doing well, we start the drugs right away to be proactive. We’ve had revisions of diagnostic criteria which allows for earlier, accurate diagnosis,” Wundes says.
Steroids can be used to limit damage and promote recovery during an acute MS relapse. Other medications can help with symptom management.
“Physical therapy, speech therapy, massage therapy, exercise, lifestyle changes like the right diet and stress management also play an important role in how well someone with MS does,” Wundes says.
If you do get diagnosed with MS, your best option is to go to a center where all the treatment you need is housed under one roof, like the UW Medicine Multiple Sclerosis Center where Wundes works.
With early diagnosis, treatment and coordinated care, the damage MS does to the brain and spinal cord can be limited and slowed, making the condition less debilitating and giving people opportunities to live their lives to the fullest.
