How to Know When Your RRMS Is Progressing to SPMS

With RRMS you likely had clear-cut attacks, followed by a significant recovery. When you're transitioning to SPMS, though, you'll likely only realize it in hindsight—when symptoms come on and then never improve, says Vijayshree Yadav, M.D., associate professor of neurology at the School of Medicine at Oregon Health & Science in Portland. If after a year your “symptoms have gotten worse without [another] relapse, that means there’s been progression,” he explains.

RRMS and SPMS share symptoms, including fatigue, cognitive problems, weakness, and coordination difficulties. But SPMS symptoms are more severe. What's more, this tends to be the case even when MRI scans show no new lesions on your brain and spinal cord. So unlike RRMS, where flares usually correspond to increased scarring, the opposite is true in this later stage of the disease.

Maybe your diagnosis of RRMS brought bladder and bowel problems from the get-go, but lately you’ve noticed they’re more frequent or urgent. “Urinary retention and leakage or bowel leakage may occur, though constipation is more common,” says Devon Conway, M.D., a neurologist at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis in Ohio. Some people with SPMS experience a constant urge to pee because the bladder never fully empties. These symptoms occur because nerve signals from the brain get scrambled or blocked as they travel to the bladder and bowels.

“If swallowing difficulties are getting worse, this can be a sign of progression,” says Dr. Yadav. You may swallow a cookie and feel like it’s become lodged in your throat, or food or beverages “go down the wrong pipe,” and you end up choking or coughing a lot. Nerve damage that occurs across many different parts of the brain can cause these and other swallowing problems, such as drooling, constant throat clearing while eating or drinking, or even regurgitation.

Neurological damage affecting the function of your lips and tongue can result in you stumbling over your words, or mumbling or slurring when you speak, says Dr. Yadav. To help with speech difficulties and to prevent choking from swallowing problems, consult with a speech pathologist who can offer tips to help with both. These include sitting upright when eating or drinking, not talking when consuming food or drink, opting for soft texture foods, not using a straw for beverages, and cutting food into small pieces.

You may realize your thinking has gradually slowed down, or you’re having a greater difficulty multi-tasking, remaining focused on a task at hand, remembering a conversation you recently had with a friend, or where, exactly, you put your wallet. According to Dr. Conway, “Processing speed and episodic memory are most commonly affected” in SPMS. That means, for example, brainstorming a solution to a problem at work may come much more slowly than usual. Your ability to remember details of past events, such as what you ate at the company picnic last year, may not come at all.

“A greater weakness of any muscle group is an indication of progression,” too, says Dr. Yadav. “You find that you can’t do the same functions with your fingers or hands that you could before,” she adds. Maybe you’re having trouble writing or picking up objects, large or small. Or you’re having more difficulty walking—you’re dragging one foot or leg, or you’re feeling more wobbly or uncoordinated. In addition to walking problems, if you’re also having more severe muscle spasms or tightness, called muscle spasticity, progression very well may be occurring, Dr. Yadav says.

Disease-modifying therapies (DMTs) suppress the immune system and stop tissue-damaging inflammation. These drugs can help delay or arrest progression from RRMS to SPMS. Some are prescribed for the transitionary phase of active SPMS, where you still have relapses and new lesions on an MRI, but you’re also experiencing secondary progressive symptoms. According to Dr. Conway, “These newly approved, anti-inflammatory disease-modifying therapies should be strongly considered in this population” because they suppress immune system response and can significantly reduce the progression of disability.

What about people who have purely progressive SPMS (meaning no new scarring) when a repeat MRI is done? “They are probably less likely to benefit from existing disease-modifying therapies,” says Dr. Conway. He believes what’s needed are treatments that protect the nerves and promote repair of the damaged myelin. “Unfortunately, no such therapies are currently approved, though a number of such treatments are under investigation," Conway says, adding how he believes it will be several years before we know how effective they truly are.

If you have RRMS and you’re taking a DMT, up your odds of not progressing to SPMS. “Stop smoking, reduce body weight if you’re obese, exercise, and, if you have high blood pressure, diabetes, or high cholesterol, modify your diet to improve these,” advises Dr. Yadav. Tobacco use has been shown to quicken progression to SPMS and disability, so do everything in your power to quit smoking. Plus, there’s mounting evidence that having diabetes or hypertension increases risk of disability, too. So embrace a healthy lifestyle, explore DMTs, and if your symptoms are progressing, tell your doctor immediately.