“Although things may seem ‘quiet,’ there may still be subtle changes that your neurologist could detect,” says Christine Gill, MD, a board-certified neurologist at University of Iowa Health Care in Iowa City.
That’s because the condition is still progressing slowly. So even though things may seem fine, continuing to monitor symptoms and letting your doctor know of any changes can help you maintain independence and your quality of life.
Monitor These SPMS Symptoms
To make the most of your neurologist visits, come prepared with a list of any changes in symptoms you’ve experienced — even subtle ones. Here are eight symptoms to keep an eye on.
1. Mobility or Gait Issues
This could mean trouble climbing stairs or walking short distances or tripping more often than you did before. “Your doctor may recommend a gait assessment, refer you to physical therapy, or suggest assistive devices to prevent falls,” says Dr. Gill. They may also prescribe a medication called dalfampridine (Ampyra) that can help improve your mobility and walking speed.
2. Changes in Cognitive Function
Cognitive changes can affect people with SPMS over time. Be sure to tell your doctor if you’re having more difficulty finding words, focusing, or planning. Your neurologist may check for other contributing causes, such as drug interactions from the treatments you’re on. They may also refer you to a neuropsychologist for cognitive testing or rehabilitation.
3. Increased Fatigue
Fatigue is common with SPMS, but if it’s getting worse or affecting your mood, let your doctor know.Your neurologist may recommend energy conservation methods, such as doing tasks during times when you have the most energy. They can also prescribe sleep medications to help you get more rest or order a sleep study to check for sleep disorders. Your neurologist will also check for other factors that may be contributing to fatigue, such as depression, medication side effects, and thyroid issues. “If these factors are adequately addressed, and fatigue is still significantly impacting your functioning, your doctor may consider medications for fatigue,” says Gill.
4. More Muscle Stiffness or Spasticity
Watch out for any cramping, pain, tightening, or difficulty with certain movements. Your doctor may suggest stretching regimens, refer you to physical therapy, or prescribe muscle relaxants or other treatments to help ease symptoms.
5. Changes in Bladder or Bowel Function
These can include issues such as constipation, frequency, hesitancy, and urgency. Your doctor may refer you to a urologist for evaluation or a physical therapist for pelvic floor exercises. They may also have you try medication to relax the bladder muscles, Gill notes.
6. Worsening Mood
Be sure to tell your doctor if you experience changes in your sleep, feel persistently sad, or struggle with motivation. They may refer you to your primary care physician or a psychiatrist to help manage your mental health. But it’s still good for your neurologist to know about mood changes, as they can have an impact on the rest of your SPMS treatment plan.
7. Vision Changes
If you have worsening vision, including double vision or other vision changes, mention it to your neurologist. They will probably refer you to an ophthalmologist or neuro-ophthalmologist. But again, it’s good for them to be aware of any symptoms you’re experiencing, Gill says.
8. A Diminished Libido
Neurological changes due to SPMS can affect sexual function, including decreased sensation and libido and trouble orgasming. Women may have less vaginal lubrication, and men may have erectile dysfunction. Your neurologist may be able to prescribe medication to address these symptoms or refer you to a specialist, such as a sex therapist.
How to Keep Track of SPMS Symptoms
Track symptoms and any changes you notice. You can use a printable log, such as the one offered by the National Multiple Sclerosis Society, or an app, such as My MS Manager, from the Multiple Sclerosis Association of America.
When tracking new or worsening symptoms, be as specific as possible by logging the symptom itself, the frequency and severity of the symptom, and anything you may have been doing that could have triggered it or helped you find relief.
To stay proactive, listen to your body and learn how to distinguish “alarm” symptoms from fluctuations in typical SPMS symptoms.
Family and friends may be the first ones to catch these changes, so be sure to ask them to tell you about anything they notice.
Work Closely With Your Doctor to Monitor SPMS
Keeping routine visits to monitor SPMS helps you and your doctor stay in sync. Many people with SPMS see their doctor once or twice a year.
To track disease progression, your doctor may order an MRI every 1 to 3 years to look for neurological changes. If you’re on a disease-modifying therapy, you’ll likely get a yearly MRI to see if it’s helping stall progression. “You also might reevaluate treatment options at each visit,” says Gill.
Exactly how often you’ll see your doctor will vary. It’s important to set up a schedule that works best for you. And if anything changes, don't be afraid to reach out between visits.
“It’s better to contact your neurologist if you’re concerned about something, rather than wait until it becomes an emergency,” says Gill. “Also, keep up with recommended health screenings, and do your best to adopt a healthy lifestyle for your whole body and mind.”
If you’re concerned that one or more of the medications you’re on may be causing unwanted side effects, tell your neurologist. Similarly, speak up if you’re having trouble taking any treatments as prescribed. Your neurologist can help you brainstorm solutions or find a different treatment that better fits your lifestyle and preferences.
The Takeaway
Even though you may not have flare-ups with inactive secondary progressive multiple sclerosis, it’s still important to monitor the condition.
Because SPMS is progressive, you may notice subtle changes in your thinking, physical abilities, and mood over time.
Let your neurologist know of any new or worsening symptoms (even if they seem small), as there may be treatments or adjustments that can help you maintain independence and your quality of life.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Resources
Brochet B et al. Cognitive Impairment in Secondary Progressive Multiple Sclerosis: Effect of Disease Duration, Age, and Progressive Phenotype. Brain Sciences. February 2022.
Jessica Baity, MD, is a board-certified neurologist practicing in southern Louisiana. She cares for a variety of patients in all fields of neurology, including epilepsy, headache, dementia, movement disorders, multiple sclerosis, and stroke.
She received a bachelor's degree in international studies and history from the University of Miami and a master's in international relations from American University. She graduated from the Louisiana State University School of Medicine, where she also did her internship in internal medicine and her residency in neurology.
Prior to practicing medicine, she worked in international relations and owned a foreign language instruction and translation company.
Erica Patino is a freelance writer and editor, content strategist, and usability specialist who has worked for a variety of online health outlets, including Healthline, Sharecare, and Twill Care. She was previously a senior editor at Everyday Health. She is also the founder and editor-in-chief of Hear 2 Tell, a website that covers advances in hearing loss treatment. Patino lives in Portland, Oregon, with her husband and twin sons.
