June Halper, MSN, APC-C, MSCN, FAAN

® program titled “Managing Neuromyelitis Optica Spectrum Disorder.” I’m your host, June Halper, a certified adult nurse practitioner and a specialized in multiple sclerosis since 1978. I’m the CEO [chief executive officer] of the Consortium of Multiple Sclerosis Centers, an organization that has a unique role and a model in MS care. I’m joined by Dr Brian Weinshenker, a consultant and a professor of neurology at the Mayo Clinic in Rochester, Minnesota; Jacinta Behne, the executive director of the Guthy-Jackson Charitable Foundation in Beverly Hills, California; and Doug and Kim. It’s so nice that you’re here to share the details of their personal journeys with neuromyelitis optica. Thank you for joining us. Let’s begin.

Dr Weinshenker, it’s nice to work with you again. We’ve worked together on this topic for a long time and now it’s time for us to share the details of something that has been of great importance to us for many years. Can you please tell us what NMOSD [neuromyelitis optica spectrum disorder] is? How is it different from MS, which is where I started, and more about its characteristics, such as hereditary, familial, and how common it is?

 Thank you very much for inviting me and for getting this organized, June. We appreciate it, and I’d also like to acknowledge the excellent work of the Guthy-Jackson Foundation, which has really catalyzed research and neromyelitis optica and helped bring to us a number of the treatments that we’ll be talking about.

Neuromyelitis optica spectrum disorder, the official name for this condition, is an inflammatory condition of the central nervous system that targets the optic nerves, which are involved in vision and the spinal cord. It’s considered an autoimmune condition, and in that sense is quite similar to MS, which is also an autoimmune condition that can affect the optic nerves and spinal cords. In fact, those are the most common adverse effects in multiple sclerosis, especially early on. But neuromyelitis optica is somewhat distinct because of the severity of the attacks that occur and because this condition is somewhat more selective than multiple sclerosis for the optic nerves and the spinal cord, although we’ve learned it’s not entirely selective, as we’ll discuss later.

It’s less common, at least in Western countries, compared with multiple sclerosis. Multiple sclerosis affects 1 in 500 to 1 in 1000 people, whereas neuromyelitis optica spectrum disorder affects about 1 in 20,000 individuals. But in some countries, especially Asian countries, neuromyelitis optica is the dominant form of MS-like illness. It’s more common than MS. It depends on the country 1 is looking at. We don’t really know the cause. We believe it’s an autoimmune condition. In fact, we recognize a specific antibody that was discovered at Mayo Clinic in a collaboration by Dr Vanda Lennon and myself in in 2004. It’s being used as a helpful diagnostic test to recognize this condition, and now we can make the diagnosis at a very early point after the first symptom by testing for this antibody. If a patient has optic neuritis or myelitis, which is spinal cord inflammation, and has a positive test for this antibody, we have a confident diagnosis of neuromyelitis optica spectrum disorder.

Is the antibody to identify spinal fluid, or is it a blood test?

 The antibody is thought to be mainly produced in the blood, and the blood is the best place to test for it because the concentrations are highest. Of course, it’s easier to send a blood test than a spinal fluid test, but we can detect it in both types of fluid, in blood and spinal fluid. In very rare situations, spinal fluid testing may offer some advantages. But in the vast majority of patients, we can detect this antibody reliably in the blood, and that’s the first place to test.

 Would a community neurologist recognize this disorder, or is this something that’s mainly in a specialist center such as the Mayo Clinic?

 We work very hard to understand, recognize, and teach all neurologists. The specific red flags that 1 should keep in mind with optic neuritis is that because it’s an inflammation of the optic nerve, it causes fairly sudden impairment of vision or maybe total loss of vision. Optic neuritis is very common, and it’s certainly, at least in Western countries, more commonly an indication of possible MS than it is for neuromyelitis optica. But we’ve learned that if the optic neuritis is particularly severe, it doesn’t recover well and there is a residual deficit in vision. If the patient is of a demographic that’s more likely to have neuromyelitis optica, like African American or Asian, we know that there’s a greater chance that neuromyelitis optica occurs in 1 of those demographics. AIso, if the brain MRI doesn’t show any indication of multiple sclerosis or the spinal fluid testing doesn’t show oligoclonal bands, which is a very helpful test for multiple sclerosis, then those are all situations in which 1 should be suspicious that this might be neuromyelitis optica and request that antibody test.

®. If you enjoyed this program, please subscribe to our e-newsletter to receive upcoming programs and other great content in your in-box.

Videos

Mayo Clinic’s Brian G. Weinshenker, MD, compares multiple sclerosis with neuromyelitis optica spectrum disorders (NMOSD) and explains why community neurologists need to receive more education on NMOSD risk factors and symptoms.

Raising Awareness About NMOSD 

In the United States, nearly 1 million individuals are living with multiple sclerosis (MS). However, it wasn’t too long ago that those two words—multiple sclerosis—evoked visions of unrelenting disability, loss of function, sadness, and isolation. Today a more positive perspective has emerged with increased access to education and awareness of this chronic disease along with the approval of more and more disease-modifying medications and a philosophical shift in the medical and healthcare approach to patient care and management.

Treatment is also becoming more personalized based on individual characteristics and symptoms rather than based on a meaningless list or chart of descriptors

Although the diagnosis can still be challenging, early diagnosis is crucial, as referral to a specialist and appropriate therapy may be able to slow or prevent further damage to the neurologic system. The McDonald criteria, developed within the past two decades, is updated regularly to facilitate the diagnosis of MS within days, rather than weeks or months. With its neuroimaging criteria to confirm the patient’s diagnosis, the McDonald criteria can quickly confirm the patient's diagnosis and facilitate prompt and appropriate treatment.

In less than 50 years, the mantra surrounding MS went from “diagnosis and goodbye” to “treat and beat it” thanks to the increase in disease-modifying therapies (DMTs). Though DMTs remain the cornerstone of treatment, new drugs for MS are constantly emerging, including not only DMTs but also agents that may repair myelin or provide neuroprotection—suggesting that the future holds greater promise for patients with MS.

At the same time that new therapies for MS are emerging, changes in the healthcare landscape are ongoing. The baby boomer generation is aging, with too few physicians to care for them, and healthcare reform and economics are influencing staffing options. Moreover, the complexity of medicine is driving the need for the provision of patient-centered care by collaborative teams.

This new philosophy and approach to MS care recognizes the importance of the patient’s voice—my disease, my symptoms, and my responsibility—and expands with the concept of partnerships. With an evidence-based understanding of MS, the role of the MS clinician has been transformed from a supportive, educative role to that of a highly-skilled, knowledgeable, and specialized professional who is part of a multi-disciplinary team dedicated to a patient’s continuing care.MS specialists impart knowledge about medications, wellness activities, reduction of risks and side effects, and facilitate self-management to promote sustained adherence.

The complexity and personalization of MS make it more important than ever for patients, family, and the general public to become educated and aware of this dynamic chronic illness as much as the medical community. MS Awareness Month is an important date on the calendar for elevating MS and all that it entails, and for providing accurate and helpful information.

ABOUT CONSORTIUM OF MULTIPLE SCLEROSIS CENTERS (CMSC)

The CMSC includes a professional network of 13,500 healthcare clinicians and scientists worldwide. Its membership represents the full spectrum of MS healthcare professionals: physicians, nursing professionals, advanced practice clinicians, pharmacists, rehabilitation and mental health professionals, researchers, and patient advocates. The work of the CMSC directly influences the quality of care for hundreds of thousands of people living with MS. The CMSC Annual Meeting, the leading research and educational conference for MS healthcare professionals in North America, will take place as a hybrid event, October 25-28, 2021 in Orlando, FL. For more information visit: 

Articles

June Halper, chief executive officer of the Consortium of Multiple Sclerosis Centers, provides an inside perspective on MS education during MS Awareness Month. 

Education is Key to Optimum MS Care & Management

Final thoughts from participants on improving quality of life in patients with multiple sclerosis.

: All in all, I think our discussion tonight really shows that there’s a huge amount of promise in MS Final Thoughts: Improving QoL in Multiple Sclerosisdue to disease-modifying therapies, as you said, the three different groups. But also it seems to me, and I guess having been in the field for a long time, knowing you, Dr. Coyle, knowing you, Dr. Foley, and of course, knowing you two people over there, Ann and Kathy, it seems to me that it’s more than just medications. It seems to me that education, that we need to use as much of a tool for each person as much as they can learn and understand, to be very sensitive to somebody’s background, ethno-culturally, people of color, people of different birth and background, that whatever you spoke about tonight was really individualized care. 

As you just said it Dr. Coyle, I think we sort of missed it in our conversation, the whole wellness approach. I think MS [multiple sclerosis] is a disease of the central nervous system, but if you take good care of yourself, you can maintain your heart and your lungs, you can do all the things in your gender that you take care of and work as part of your team. I think to me that’s the most important thing to not have a physician or a clinician, such as Dr. Foley, say you must do this. You’ve got to participate. I think you have to understand, and you have to be involved in the process. We’re reaching the end of our visit. I’d like Dr. Foley to say some closing words, maybe some words of wisdom.

: Well, from a psychological perspective, MS [multiple sclerosis] has presented many, many challenges to persons with MS and their families. Anxiety, depression, adjustment issues, uncertainty, misinterpretation of kind of changing behaviors in patients, all these things represent challenges. Fortunately, we know that many of these psychological challenges and even some of the cognitive problems that patients develop can be treated more successfully today than they could five years ago. We’re very optimistic that we will continue to be able to improve the quality of life for people with MS.

: Ann and Kathy, thank you so much for sharing your story with us. Would you like to say one or two closing remarks to end our very?

: I would say is I would concur with what Dr. Coyle said earlier on. Get on therapy as quickly as you can. I mean, there wasn’t anything out when I was diagnosed but I waited a long time. I’m not saying it was bad, but if I had gotten on it earlier, that I would recommend. Talking often and regularly with your significant other and your close friends, and also, I would suggest seeking out support of people who are in the same boat as you. I go to an MS support group here in West Milford that meets once a month, and I think that’s very, very important to do.

: Just to roll with the punches a little bit. Remember that flexibility is important, and the bottom line is you love each other, make sure you respect everything about the person. I know her really well, so I know when things are bumpy and when they’re not. When they’re not bumpy, do something fun. You have to laugh.

: Absolutely, yeah. Dr. Coyle, thank you so much for spending this time with us and sharing your thoughts. Would you like to say some closing remarks and any words of wisdom before we adjourn?

: Just from a neurological point of view, this is a new era. MS is the poster child for successful development of disease-modifying therapies. Make sure your diagnosis is proper, you’re going to a knowledgeable person, get on early treatment, follow that wellness program, treat comorbid conditions to promote CNS [central nervous system] health, to have the central nervous system age better, open communication. And remember, the bottom line is you want to be happy. If you’re not happy there is something wrong, and you have to fix something, and if you’re not happy in your relationship with your healthcare provider, that has to be fixed. You want to be happy. You should be happy. If you’re not happy there’s something wrong. Act on it.

: Wow, powerful words. I think we have some very powerful messages we shared tonight. I want to thank you all for watching and joining us at this NeurologyLive® Cure Connections®. If you enjoyed this program, please subscribe to the e-newsletter to receive upcoming information about other programs. I’d like to thank you all for the time and I thank you all for this wonderful opportunity and hope to see you all again.

Final Thoughts: Improving QoL in Multiple Sclerosis

Clinicians suggest improved communication between partners and striking an optimistic tone with patients can be encouraging for patients with multiple sclerosis.

: Fred, what advice would you give your patients, although you know Kathy and Ann for a long time. How did you get this thing? I know you were involved for a very long time. What words did you use? What strategies did you use that you think worked and would work with others?

: Well, everyone’s situation is different. Everyone’s relationships are unique, so it’s just important to find out and understand what is the nature of the relationship and what are the strengths and what are the weaknesses, and to kind of develop a strategy to shore up the strengths to improve communication between the partners. If you can do that, I found that if I can help them improve their communication, most of the time they’ll just work things out themselves. That’s a key strategy.

: Dr. Coyle, I know you’re sitting and listening to all this. I know you have hundreds of patients and probably face similar relationship challenges. How do you handle it? I know they probably all look to you for advice and support, but I know you also have nurses and psychologists at your place.

: I think quality of life is very important, and you can start by saying how do you think about being diagnosed with MS. If at all possible, it’s better to be optimistic than to be pessimistic. It’s better to look at the glass half full than the glass empty. Bad things are going to happen to all of us. Bad things are going to happen to good people. If you hear you have MS and you view it as this horrible thing and you dwell on that, that is a negative. That’s not producing a good quality of life.

I try to be very encouraging. I tell my patients, “Our expectation is that you’re going to live a normal life. If you really do the right things, if we treat you appropriately, if you follow a wellness program, if you take care of comorbid conditions, you can live a normal life. We can work together to have you have a normal life because MS has been transformed in the new era.” As disability may develop and as symptoms develop, they can also have very negative impacts on quality of life. Important to communicate, important to recognize, important to try to treat to let the individual know that you’re doing the best you can what are the ways of coping and you really encourage that they have a support system. I have no problem having a family member come in with the patient to sit right there, to be for the whole thing, the whole visit. That’s fine because you’re hearing the patient and their significant other, hear everything that’s being said, be able to ask questions. I think that helps the support system. These are just some of the things that I think you need to be very cognizant of.

: I want to thank you all for watching and joining us at this NeurologyLive® Cure Connections®. If you enjoyed this program, please subscribe to the e-newsletter to receive upcoming information about other programs. I’d like to thank you all for the time and I thank you all for this wonderful opportunity and hope to see you all again.

Optimistic Outlook in Treating Multiple Sclerosis

The support of family and friends offers strength to patients with multiple sclerosis.

: Speaking about struggle and the things that we need to keep us going, we all need support networks. Obviously, you and Kathy, Ann, have a very strong relationship and you’ve been through quite a bit together for a very long time, and nothing seems to have broken you apart except maybe a dog barking like in my house. There’s a term that Fred taught me a long time ago about people who bounce well with MS [multiple sclerosis]. I think he defined it as resiliency. In fact, there’s a lot of nursing research going on about the characteristic of resiliency because right now a lot of nurses are going through very difficult times with the COVID [coronavirus disease 2019] and the things that we’re facing. It seems to me that how you have developed this characteristic or did you always have it? Were you always flexible? I just need to know a little bit more about what made you bounce or bounce nicely, yeah.

: There are times where I can be very flexible and then there are times where I can dig my heels in. I’ve had to learn resilience. I’ve had to learn patience with myself. I have the patience of a saint with anybody else in my life but with myself I have no patience at all. As Dr. Coyle and you were just saying about the fatigue, they’ve tried me on Nuvigil and Provigil years ago and the heart palpitations, I thought my heart was going to pop out of my chest. I haven’t been on anything. So I’m willing to, if they’re coming out with some new drugs, I’m willing to give it a shot because right now that’s one of the biggest parts of the exacerbation that I’m having is I get up, I take a shower, and I’m ready to take a nap. I think the quality of my life right now is not, I don’t think, I know it’s not where I’d like it to be and it’s very hard for me to accept it.

: I bet. Kathy, how have you handled this, the ups and downs? You’ve been a stalwart partner. I know you’ve had your other ups and downs of your own personal nature. What’s helped the two of you to come through this so successfully? And I do think you’re a successful partnership, from my perspective.

: Both of our families are actually really supportive. My parents are both in the medical field and still alive, so we often will chit-chat with them and perspective is always a good thing. We have a huge network of friends that almost know what we need before we know. So, if we’re really struggling, there’s always somebody that will fill in the blank. Like I’m still working but Ann’s has not been, and the fatigue is what really, between that and the brain fog, she couldn’t do what she was doing. So that was a huge adjustment. The fatigue is the most frustrating part because you can’t consistently plan a schedule.

: That’s the hardest part for me because I’m a very structured person, and if you’re supposed to do this at 9 o’clock this morning then what are you doing? Your support system, my professional background, I can go back and read things and go, okay, like you have to give her the benefit of the doubt, you have to give her the support. You have to know when to back away a little bit and get your perspective back and make appropriate suggestions.

: What advice would you give other care partners? Certainly, one of the things I saw when I was in practice, and I was in practice for 25 years, is the high rate of divorce and people separating. You probably have been probably at the far end of relationships that stayed together.

: And Dr. Foley knows what I’m talking about.

: That was my biggest fear that Kathy was going to leave me and not until too long ago I still had that fear. It’s due to the help of Fred and through dealing with Kathy and talking to her that I realized that she loves me unconditionally and she’s not going anywhere. But it wasn’t always like that. It was a big, huge fear of mind because that’s what I saw in Glen Rock where I grew up.

: I know there were a lot of those patients. What convinced you that she was going to stay? What gave you the security knowing that you had a strong relationship?

: Talking to Dr. Foley and letting Kathy know. I’m more of a talker than Kathy, so I can beat a dead horse sometimes. I have learned to not beat the dead horse and tell Kathy, “This is what I can use from you. Maybe you can see it this way. Could you view it another way,” because she knows I’m not a slacker.

: And if I don’t do something, there’s a good reason for it. Because we have communicated and a lot more recently in the last many years, I think it’s helped us to stay together.

: She’s a very proactive person as far as her medical care goes, so she’ll reach out. She went for a stint at Kessler for cognitive.

: Rehab which was really helpful because it gave her a lot of tools, and I didn’t have to be the one to tell her. We use the outside, even though I can support it, I don’t feel like I have to do it.

: It’s like teaching your spouse how to play tennis. You don’t want to do it. You’ll never be married at the end of it, so don’t do that with us.

Patient Support Networks for Multiple Sclerosis

The phase 3 OPTIMUM head-to-head trial of ponesimod compared to terifunomide showed a positive impact on multiple sclerosis fatigue.

: There were other studies presented over at ACTRIMS-ECTRIMS virtually. And there was another study called OPTIMUM which looked at ponesimod and teriflunomide. I’m wondering if there was anything that we need to think about in terms of future treatments.

: This was a very interesting phase 3 trial. Ponesimod is a second-generation S1P [sphingosine 1-phosphate] receptor modulator. It’s a second-generation oral fingolimod. It hits S1P [sphingosine 1-phosphate] receptor 1 principally. They’re trying to get away from the cardiac side effects and the first dose monitoring. It went against oral teriflunomide. It was the first randomized prospective study that looked at two oral agents. It was a 108-week study. The primary outcome was annualized relapse rate. That was significantly better with ponesimod than teriflunomide. 

But the people running the study did something that was pretty surprising. They added, as a secondary outcome, a fatigue measure. Now, that’s unusual. You really don’t see that. They used a new more extensive validated patient-reported outcome for fatigue— the Fatigue Symptom and Impact Questionnaire in Relapsing MS. What they found was that the fatigue as measured by this fairly extensive self-reported outcome remained basically at the exact same level throughout the two years of the study in the ponesimod arm, whereas it significantly increased over time in the teriflunomide arm. There was significantly less change, less development of worsening fatigue with the ponesimod versus the teriflunomide. That was interesting. It was gutsy. It was a secondary outcome. They happened to have won in that regard. It will be very interesting. Ponesimod is in front of the FDA right now. They’ll probably make a decision in the first of order of this upcoming year, and it will be very interesting to see if ponesimod gets approved, what people think about this impact potentially on fatigue.

: It’s interesting because it’s probably one of the first disease-modifying therapies that had an impact. As you said earlier, the interferon betas made people more tired of the side effects, should it be approved? I guess it may fit in to your treatment paradigm as far as you come across somebody with significant fatigue and relapsing MS [multiple sclerosis].

: It will certainly be something to consider. It’s going to be competitive in the S1P [sphingosine 1-phosphate] receptor modulator group— fingolimod, siponimod, ozanimod, and presumably this may be added, ponesimod, absolutely.

: Well, you’ve got one more drug to think about, my goodness. We’ll need a chart like the chart for atomic weights.

: That’s why you need somebody knowledgeable about MS [multiple sclerosis]. I mean, if you’re going to diagnose and treat patients, you need to be familiar with all the treatments.

: Dr. Foley, in listening to all this, any comments about patients’ quality of life? Do you have any feelings about this particular study as it’s starting to evolve? Are you hopeful?

: Just from a clinical standpoint, I’ve seen the impact that the disease-modifying therapies have had on patients’ quality of life. Any time you can slow the progression to disability, that kind of has a counterpart in a quality of life. There are still many challenges of quality of life in MS [multiple sclerosis]. Every study in quality of life in MS show that MS patients have significantly lower quality of life than people without MS [multiple sclerosis]. And that quality of life tends to become lower over time as disability progresses. The challenges that people face to managing their employment status, managing their relationships, managing the MS [multiple sclerosis] symptoms. As Dr. Coyle was saying before, fatigue is a devastating symptom and the primary cause of unemployment in MS [multiple sclerosis], the frontal motor problems. All of these things affect the quality of life that patients and their family members have to continue to struggle with.

OPTIMUM Trial for Multiple Sclerosis

Negative results of the TRIUMPHANT-MS trial for treatment of fatigue in multiple sclerosis.

: I know when I was logging on to ACTRIMS-ECTRIMS most recently that virtual 2020, there were a couple of studies. One was called TRIUMPHANT-MS trial of methylphenidate, modafinil, and amantadine. I remember Dr. Anne Cross, Lauren Krupp and I, did a study many, many years ago. Can you comment on that? It was kind of interesting.

: TRIUMPHANT was a PCORI-funded study run at Johns Hopkins principally, and the goal was to test three of the top agents that are used to treat fatigue against placebo. And they entered 141 MS [multiple sclerosis] patients and they really did rolling crossover studies where for four weeks they would be on placebo or one of the three agents that you had mentioned with two week washouts. They did this study because the observation had been that the data, the clinical data supporting drugs helping fatigue is really weak. They wanted to take out these three principle agents and formally test them. They used a patient-reported outcome called the Modified Fatigue Impact Scale or MFIS as the outcome. None of these three top treatments for fatigue showed any significant impact on fatigue compared to placebo. It was a bust.

: They failed to show benefit for any of the three drugs. Now, of course, they argued, well, it’s only 141 patients. They did a post hoc analysis and those that had increased daytime sleepiness did show a response to methylphenidate and modafinil. But that’s a post hoc analysis. You can’t count it. It just emphasizes that we use drugs to treat fatigue, it’s only one of a systematic multicentric approach. And I wouldn't be so encouraging about it. I tell my patients there’s a 50% chance, but one on one somebody might really get a benefit from treatment with a drug, medication, but there are other ways to treat fatigue as well.

: I remember when we did the study, God, it’s got to be in the midle 80s with Lauren Krupp, and we did it at Holy Name, we had the same result. It was really nothing outstanding.

I want to thank you all for watching and joining us at this NeurologyLive® Cure Connections®. If you enjoyed this program, please subscribe to the e-newsletter to receive upcoming information about other programs. I’d like to thank you all for the time and I thank you all for this wonderful opportunity and hope to see you all again.

TRIUMPHANT-MS Trial for Multiple Sclerosis

Many patients describe multiple sclerosis fatigue as their number one symptom. Different types of fatigue are discussed.

: I’m thinking about the impact of fatigue. I know that one of the most prominent features of MS [multiple sclerosis], even early on before someone receives a diagnosis, is fatigue. Dr. Coyle, you find that the diagnosis of MS is sometimes stymied by the fatigue that people can’t figure out where it’s coming from and how it can impact the rest of the body, including cognition?

: It’s very interesting. We now recognize that there’s a prodrome to MS that may take five to 10 years before neurological onset of the disease where there are health care issues not necessarily neurologic at all that are occurring. And there are studies that indicate fatigue, very significant fatigue leading to diagnoses of chronic fatigue, etcetera, may be part of the prodrome in the few years before somebody declares themselves as having MS. I think we recognize fatigue as often the number one symptom of MS, often rated as the worst symptom, reported ultimately in as high as 80% to 90% of individuals with MS. And there are different types of fatigue. There’s primary MS fatigue, and there are secondary types of fatigue. But the interesting thing is that the fatigue is not necessarily associated with obvious visible disability. It’s an invisible symptom, and you can have somebody that looks great and has normal strength and coordination, and yet they may not be able to work because of their profound primary MS fatigue. It is a very significant symptom that can have tremendous impacts on activities of daily living if it interferes with both physical activities and cognitive activities.

: But how do you measure it though? Is there only patient self-reported? Is there a scale? Is there an exam you could do?

: Well, there is no biomarker. It is based on patient-reported outcomes or PROs. There are a number of validated scales that one can use to rate the degree of fatigue. You are depending on the patient reporting it. We don’t have any blood tests that we can do to measure it at this point in time.

: Are there specific disease-modifying therapies that you would avoid because of the side effect or is it just across the board that it doesn’t really matter your decision is going to be on the MS?

: The only class of agents I might be concerned about would be the interferon betas. As a cytokine, sometimes you can see associations with fatigue with various cytokines. But we do not identify DMTs [disease modifying therapies] especially with causing worsening fatigue as a very, very common issue. Generally, that’s not a major factor and the primary MS fatigue we don’t understand. It’s related to various biological issues. It may connect to circuits, to inflammation within the central nervous system, to specific targeted areas being involved. And there may be multiple mechanisms that are involved in primary MS fatigue.

Multiple Sclerosis Fatigue

Ann Moore shares the quality of life issue of cognitive changes in multiple sclerosis and strategies she uses to manage.

: Speaking of New York and issues unrelated to MS [multiple sclerosis] but certainly related both directly and indirectly, there’s an issue of quality of life. MS, Dr. Foley said it, it’s this sort of Damocles. Some people talk about it as if it’s in the Charlie Brown cartoons with the cloud over your head walking around. It’s something that’s there the rest of your life. What is the most significant quality of life issues that the two of you have faced? And Kathy, speak up. This is your partnership as well as Ann’s. How do you manage them other than getting a word in edgewise from Ann?

: Right? I think for me it’s being flexible and sometimes knowing when to take a step back. Like if I know I’m frustrated or upset, like I’ll come home and I’m like, “Why did you do that? You should have done this.” And then I step back and go, “Well, I didn’t leave her a list, so she didn’t really process.” The cognitive things are actually the hardest thing because you can’t see it, and anybody that knows her doesn’t really notice but I notice. 

: I chase my tail most days, especially now with this flare-up that I’m having. If I don’t write it down and write it down in the order in which I should do it, based upon the time in which I get up when I have the most energy, the plan goes out the window.

: Dr. Foley, I see you nodding your head. Any comment?

: But Ann is talking about a very good strategy to use to help compensate for cognitive changes. We teach people to become more organized. We teach people how to use lists and calendars in ways that are effective. There are also some techniques now for improving verbal learning and memory in MS which we can help patients with. Ann, you’re on board with a good technique there.

Quality of Life Issues:  Cognitive Changes with MS

A patient shares the treatments she has received for multiple sclerosis.

: Ann, when you first started your journey with MS [multiple sclerosis], were you put on a disease-modifying therapy? I think you mentioned 1989 and we know that was one of the early years before therapy started. I think it was 92, right, Dr. Coyle?

: I was diagnosed in 1989 and I conferred with you and Dr. Geiser, and it was determined that I have MS. But, at that point, they had no therapies out. I have to be honest, I thought for the first 10 years they made an incorrect diagnosis. I was fine. I had nothing wrong with me. No numbness, no tingling, no weakness, no anything. And then 10 years later I’m like, “Oh, something’s not right here.” I was having a, unbeknownst to me, a thoracic exacerbation. I called over to the MS Center, at that point Dr. Cohn was there, went over to see you folks, and you said, “Annie, here are the therapies that are out. I know you; I would suggest that this is the one you go on, but I suggest that you also do some research on your own and see if you concur with me.” I was very happy at your suggestion and for 15 years I was on Copaxone and I thought it was a magnificent drug. I still think it’s a good drug. Just after 15 years it ran its course and I had to switch therapies.

: I know Copaxone had minimal side effects, but the injection every day, how’d you handle that? 

: I went on, when you had the powder and you had to mix it with the solution and rub it between your hands.

: No auto injects or anything like that. Kathy had to do four of the injections because I couldn’t reach them. You know what, needles don’t bother me, so I did not have a problem in doing that. I mean, I do have divots in all seven locations right now and will for the rest of my life, but it’s OK.

: Well, Kathy didn’t seem to mind. Right, Kathy?

: I am on Rituxan. I had been on Rituxan now for a couple years, so, as a matter of fact, I go, I believe it’s in February, that I go for a Rituxan infusion. Yeah, Dr. Williams, the doctor that I go to right now at the International MS Center is very good because he can juggle. As he said, “Ann, I have a lot of cocktails.” I mean, over the years, yeah, I was on, but even before I went on Copaxone, I did IVIG for 10 months. I’ve done Tysabri a couple times. But for the last three or four years it’s been methotrexate injections and Rituxan.

: Dr. Coyle, any comments about Ann’s therapy?

: Well, rituximab [Rituxan] is a chimeric anti-CD20 monoclonal antibody therapy. It is not approved by the Food and Drug Administration (FDA) for MS but clearly has significant off-label use in Sweden. Kaiser Permanente, I understand it’s their go-to MS drug. It’s much cheaper. We have two FDA approved anti-CD20s, in humanized and human for MS, but rituximab is much cheaper. I think it’s a very reasonable alternative, high-efficacy agent, even though it’s never going to be approved for MS.

: Well, it seems like your journey with MS and medications, Ann, has been an interesting one and it seems that.

: Yeah. I am my mother’s daughter. My mother had this, we would have put it on her headstone if we could have, “Can do.” I can do it and that’s how I feel.

: Right, Dr. Coyle, Dr. Foley, right? The New Yorkers …