How long a person stays in the RRMS stage of multiple sclerosis varies widely, but eventually, most will transition to a stage called secondary-progressive MS (SPMS), in which relapses occur less frequently or not at all, but symptoms become progressively worse, and disability gradually increases over time. It’s possible the newer disease-modifying drug therapies (DMTs) for RRMS will delay or even prevent the onset of SPMS in those who take them. DMTs reduce the number of relapses a person has and therefore reduce the accumulation of injury to the central nervous system. Some DMTs have also been shown to slow disease progression. But for many people currently living with MS, particularly those who did not have the advantage of newer DMTs, SPMS is very real and can cause major changes in both physical and cognitive function. Here, three people describe how SPMS has affected them.
Jennifer Powell: Knowledge Is Power
Jennifer Powell is 49 and lives in Orange County, California. EH: When were you diagnosed with RRMS, and for how long before the diagnosis did you experience symptoms? JP: I was diagnosed with RRMS in November 2010, when I was 40 years old. That previous summer, I began to experience profound symptoms: I had extreme fatigue — I could not stay awake for a complete day — and I began to slowly lose my balance. I made an appointment to see a neurologist, but just prior to it, I fell backward in the bathtub and realized that something was very off. Then, on the very day I was scheduled to see my doctor, I was slurring my words and unable to speak clearly and had profound numbness. Those symptoms went away after a few days, but at the time, I thought I was having a stroke. It was terrifying. EH: When were you diagnosed with SPMS, and what were the signs? JP: In 2013, I learned that I had SPMS. The medication I was taking for my RRMS symptoms didn’t seem to be working any longer, and I had developed dystonia [a movement disorder that causes involuntary muscle contractions] and dysphasia [also called aphasia, a language disorder that affects the ability to express or sometimes comprehend words]. I’ve always been very verbal and an avid reader, and when I had to stop reading, it was devastating. I experienced foot drop [difficulty lifting the front part of the foot] in my right foot, which never went away, and my walking became encumbered. EH: Had your medical team prepared you in any way for the transition from RRMS to SPMS? JP: Prior to my diagnosis of SPMS, my doctor never prepared me for progression. I knew it was a possibility, but I wish I’d known more about what to expect. In 2014, I had to change neurologists, and it was the biggest blessing in my life; I could not do this without her partnership. She explained in depth what was going on and why, and what I could expect. She also told me what symptoms to look for, such as signs of neurodegeneration (like problems with my speech, swallowing, losing words), fatigue, and heat sensitivity. EH: How has your MS and its treatment changed since you transitioned to SPMS? JP: I no longer have relapses like I did with RRMS. I have exacerbation of symptoms, but I no longer recover. For example, I have numbness on the right side of my face that has not gone away. I have trouble swallowing and enunciating, and my leg pain is all-encompassing, all the time. And my gait and mobility have changed. My treatment has gotten more comprehensive. Since my SPMS diagnosis, I now have a primary physician who corresponds regularly with my neurologist, a physical therapist, a pain medicine specialist, a speech therapist, and a psychotherapist. It’s very important to have a good medical team, and there have been times I’ve leaned heavily on them and times I’ve merely checked in. EH: What are the worst and best things about living with SPMS? JP: The worst is the deterioration and slow decline. There is constant grieving over the loss of function (motor and cognition) that affects you and the people around you. The best part is that I have been able to see my life as incredible, and am humbled by my blessings. There are bad days when I do cry, but I am constantly mindful of what I can do. I try to practice mindfulness, optimism, faith, and hope. Life has gotten slower. I am physically slower, some days I need a cane, and some days I cannot get up the stairs. But — and I know this may sound cheesy — for me, things have gone from black-and-white to Technicolor: I lie down on the grass with my dog, and I can appreciate the fragility of life. EH: What would you like others to know about living with SPMS? JP: Life is still beautifully worth living. It’s so important to be kind and gentle with yourself. Allow yourself to grieve, find a support system, and find a purpose. I write a weekly column for Multiple Sclerosis News Today, which is a part of BioNews Services, a publication company that focuses on rare diseases. It’s been one of the most profound blessings of my life. Also remember that knowledge is power. Not being scared and getting the information you need about your condition is integral to handling SPMS. Diagnosis is the beginning of a new chapter. Create possibilities where you’re at: Create the medical team and people around you at home who are supportive. And reach out to networks that are out there for people with MS. This is not meant to be journeyed alone.
Brenda L.: You Have to Mourn the Loss of Your Old Life
Brenda L. is 62 and lives in Texas. EH: When were you diagnosed with RRMS, and for how long before the diagnosis did you experience symptoms? BL: In 1988, I woke up one morning and realized I had double vision and couldn’t see properly out of my left eye. Doctors ran tests to rule out a stroke, and when my vision returned to normal, I was never diagnosed with anything. Then five years later, in 1993, I experienced a series of symptoms that led to a diagnosis of RRMS: I was at the grocery store and couldn’t write a check — it was like the message was not going to my hand, and I couldn’t make it work. That night, my right leg went numb. After my diagnosis, I looked back and realized that I’d experienced MS symptoms that I was in denial about. My shoulder hurt, my hand hurt, and I sometimes stumbled. I also experienced bladder problems, which I chalked up to having had four children. EH: When were you diagnosed with SPMS, and what were the signs? BL: In 2012, I was diagnosed with SPMS. I had a flare-up of symptoms and thought that I was having a relapse, but when I had a MRI, the scan showed no new lesions. For nearly 16 years after my diagnosis, I had almost no symptoms. That all changed in 2011, when I started to experience stiffness in my body and then developed many other symptoms. EH: Had your medical team prepared you in any way for the transition from RRMS to SPMS? BL: My doctors — who included a primary care physician and neurologist — didn’t really prepare me for the possibility of SPMS. I wish I’d known; I would’ve liked to have been proactive about transitioning to SPMS. EH: How has your MS and its treatment changed since you transitioned to SPMS? BL: When I had RRMS, I had minor MS-related issues like gastrointestinal problems that came and went. But now my symptoms are continuous, and I have new ones that I didn’t have before 2011. I have spasticity, slurred speech, foot drop, bowel issues, and constricting pain in my chest (the MS hug). I also have floaters in my eyes and sometimes lose vision in my right eye (it’s like looking through a straw) — that’s the only symptom that comes and goes. I also have chronic fatigue and chronic pain and cognitive issues like short-term memory problems. I also have long-term memory loss — there are some places I’ve gone all my life where I get lost now. And I have attention and concentration problems and MS fog. Since 2015, I use a walker about three to four days a week. I also have depression — I had to mourn my life. Today, I have a medical team that includes a primary care physician, neurologist, cardiologist, endocrinologist, gastroenterologist, physical therapist, and psychotherapist. EH: What are the worst and best things about living with SPMS? BL: The worst thing about having SPMS is that my old symptoms get worse and continue and my new symptoms also continue. The best part? There’s less hospitalization (when I was first diagnosed in 1993 I was in and out of the hospital). Plus, I’m still alive, and I’m gonna fight no matter what. EH: What would you like others to know about living with SPMS? BL: If you have MS, know that whatever symptoms you’re experiencing, they’re going to get worse and continue, and you will have new symptoms. Get really good therapy, and mourn the loss of your old life. For me, I used to be a workaholic and I had to let go of that. Also keep in mind that MS is often an invisible disease — people will say you don’t look sick. For people who don’t have MS, I would like them to know that multiple sclerosis hurts, is full of challenges and struggles, and is invisible, since the destruction takes place inside the body. I wear a smile most of the time, but that just means I am doing a good job of covering up my symptoms. My smile is a mask, and if I take that mask off, I get sad, depressed, stressed out, frustrated, agitated, irritable, angry, and afraid. MS is progressive and unpredictable, which means that although I may be moving around slowly and carefully today, I may not be able to move at all tomorrow. I have my bad days and at times terrible, horrible, really awful days. I have chronic pain and chronic fatigue (at different levels on a scale from 1 to 10) every day of my life. I have to plan carefully and strategically to do anything, including day-to-day activities, and sometimes my bad days happen within minutes of a good moment. Today, I’m on a mission to be a patient advocate and an activist. I am an MS warrior. I don’t have time to be mad at MS — that’s too much negative energy.
Mike O.: Save Your Energy for the Things That Matter
Mike O. is 51 and lives in New Jersey. EH: When were you diagnosed with RRMS, and for how long before the diagnosis did you experience symptoms? MO: I was diagnosed with RRMS in 2012. Sometime around the mid-2000s, I’d experienced some exhaustion and joint pain that came and went. But I didn’t think much about it until summer 2007, when I froze up at a meeting. Someone asked me a question, and I couldn’t respond. When I saw my primary care physician, he recommended that I stop working too many hours, reduce stress, and lose weight. I did all those things, but a year later, my symptoms returned. By now, I was experiencing pain in my joints and back and cognitive fog (I’d have episodes when I couldn’t speak or process what was going on), and fatigue that was so severe that I found myself having to pull over on the side of the road to sleep. Over the next several months, my symptoms worsened. I struggled to be efficient at work; I’d lose my balance and fall, and fell down the stairs several times. I fell asleep at the wheel and got into accidents. My wife persuaded me to go to the ER, and despite the doctors’ not finding anything, my wife insisted that I be admitted. Based upon previous blood tests, doctors diagnosed Epstein-Barr virus. I underwent MRIs, which found lesions in my brain, and the doctors gave me another diagnosis: Lyme disease. For the next couple of years, I was treated for Lyme disease, but nothing was getting better. In fact, I was getting worse for longer periods. Then, in 2012, I had a lunch meeting with my attorney and struggled to stay awake. He asked me if I’d been tested for MS (his wife had the condition). I saw a neurologist who eventually confirmed that I had RRMS. EH: When were you diagnosed with SPMS, and how has your MS changed since you transitioned to SPMS? MO: When I finally got my RRMS diagnosis, in September 2012, the doctor explained that it was RRMS “with an asterisk,” meaning that he thought I was already progressing into SPMS. In the spring of 2015, when my mobility had become more challenging, he officially diagnosed me with SPMS. I’ve gone from being able to walk without assistance to using a cane or walker. I also have cognitive issues — I can’t get on a computer or log on to a website for very long; I have to get up very early in the morning and have only about 15 minutes. After that, it’s almost as if someone unplugs me. I can only drive for about 15 minutes on local roads, and I fall asleep on the highway when I’m a passenger in the car. When I talk on the phone, I have to lie down and close my eyes. And if I’m at an event, I have to be careful and take breaks; if I try to talk freely to people I could end up on the floor. I look at it this way: If I have $100 a day, how much of that is used up by which activity? I wake up, make the kids breakfast, go to the gym, and take a shower. I’ve learned over the years how to divide up and save my energy. EH: What does your SPMS treatment consist of? MO: Today, I have cognitive therapy, and I work with a neurologist and a nurse practitioner. I go to occupational therapy to help numbness and get dexterity back. And after I had to stop working, I saw a psychologist. EH: What are the worst and best things about living with SPMS? MO: I used to drive my kids places, but now I can’t go far — that’s tough. And I can’t go on a hike with them. I also worked my tail off, but lost my house because I couldn’t work as much, then eventually not at all, and I had medical bills. But on the other hand, I appreciate every moment with my wife and kids. I see how much friends and family help, and we have such a supportive community. Everyone is a phone call away, and neighbors drive my kids to cheerleading practice and games. EH: What would you like others to know about living with SPMS? MO: If you have MS, know that living with SPMS is a constant painful and exhausting struggle and challenge, but you can get through it. Don’t focus on the disease — focus on something bigger. For me, that’s communicating about what it’s like to have this condition. Remember to be your own advocate, and do your own research. MS is so different for every person. See a therapist for the depression and anxiety that comes with this disease, and find an MS support group. For people who don’t have MS, I would say to imagine a time in your life when you had the flu. You probably felt weak and maybe couldn’t even get out of bed. Your body probably ached, and answering a question or even having a thought may have been painful and confusing. Even when you were getting better, you may have still felt weak. Having MS is sort of like having some version of the flu every day for the rest of your life and still having to find a way to get through your day, every day. That’s certainly a gross generalization, but it’s the closest I can get to the reality of it.
