Transcript
This transcript has been edited for clarity.
Shiv Saidha, MBBCh, MD: Hi. I'm Dr Shiv Saidha, a neurologist and multiple sclerosis (MS) specialist at Johns Hopkins University. Today joining me is Jack Ellington, who has been my patient for over a year. Jack, thanks so much for joining us.
Jack Ellington, MBA: Thank you. I'm really looking forward to our discussion today.
Saidha: Well, that's good. And I'm excited for us to have our discussion and conversation surrounding how to properly and accurately convey a new diagnosis of MS and the patient journey — what that looks like from both lenses.
Multiple Sclerosis: A Challenging Diagnosis
Saidha: What I would begin by saying is that diagnostically MS is a challenging condition. It presents differently in every single person. Typically, we think about people who present with their first symptoms, they have a relapse, and then they often remit, so they improve and sometimes fully resolve.
And then there's another subtype, which is called primary progressive MS, where people never have relapses; they just gradually accumulate disability from the beginning. In terms of your subtype of MS, my final conclusion was that this was relapsing MS.
Ellington: I believe it started in 2010, which is 14 years before I met you. I was experiencing these MS-like symptoms — the burning, the tingling — but my neurologist at the time did not go down that path of diagnosing MS.
Saidha: But then when you represented, it was really hard for me initially to even differentiate: Are you still in the relapsing phase of the disease? Are you a secondary progressive?
The issue with all of these different subtypes is that they're black and white in the way that they're described, but actually there's a huge grey zone where they really overlap with one another. And that's got to be really hard and challenging from the patient perspective as well, I would think.
Ellington: Well, it's a challenge, and dealing with that uncertainty is absolutely the most important thing to overcome as a patient.
Saidha: So do you ever feel like just hiding this diagnosis away?
Ellington: Absolutely. Up front, I rejected it. I did not want to believe that I had it.
Saidha: There's a period during which there's just a natural psychological fluctuation as part of the process of acceptance, where somebody just needs a little bit of time to absorb what is a pretty big hit. There's now this chronic condition that we weren't told was there before.
Patient Concerns
Ellington: You met me and you saw that I was in my fifties. Does that change the way you think about patients when you first meet them?
Saidha: It does have a bit of an impact. Prognostically, we know that people who present a little bit later, who are older at the time of diagnosis, tend to have a little bit worse prognosis.
And men, in general, also have a little bit worse prognosis. And in your case specifically, in my mind, I was thinking, I know that at least 14 years before this point in time, there was some MS activity.
Ellington: For patients who are older, their immune system is different from that of patients who are younger. And I imagine that is a factor as well, right? Mine is not as fired up as a 30-year-old's immune system.
Saidha: Yeah, it is a factor. We believe that the risk for complications — particularly infectious complications, with most of our treatments that suppress the immune system — increases with age; we try to balance that. Can we get away with being a little bit gentler?
That was one of the reasons why we were going back and forth with the treatment decision-making in your case. Could we potentially get away with something that maybe is a little weaker but might be a little bit safer?
Therapeutic Considerations
Saidha: But nowadays, we have many classes of treatment, including highly effective treatment.
We decided to put you on one of the more potent treatments. Broadly speaking, we can think about the treatments as being kind of low-, intermediate-, or high potency. And you're on one of the B-cell-depleting therapies, ocrelizumab. Did you really feel like it was a shared decision in terms of arriving at the treatment choice?
Ellington: I trusted you because we had good communication, and you explained the different options available to me and why you chose ocrelizumab. And you know, I had done my research on the different options, and I concluded the same based on what I read.
Saidha: Obviously, we made the decision together, but in terms of guidance, I was guiding toward a more effective treatment.
Ellington: I was concerned mostly about the suppression of my immune system and whether I was going to, in a post-COVID environment, be able to fend off infections. And now it doesn't bother me. I've actually been super careful washing my hands wherever I go, recognizing that's probably where 90%, or a significant amount, of infection comes from. And I don't think I've had more than one infection.
Lifestyle as Medicine
Saidha: Yeah. I fundamentally believe that immune treatments alone and targeting the immune system is not sufficient. And we really need strategies for neuroprotection. My suspicion is that this is not an area where a lot of MS specialists will spend a significant chunk of time in the clinic with their patients, talking about diet, exercise, stress management, sleep hygiene.
I think these are things you've heard me harp on about in clinic. How successful have you been at some of the lifestyle side of things?
Ellington: Sleep: very unsuccessful. There's not much you can do. I do take Ambien (zolpidem) to help with sleep. Exercise is easy for me. I look forward to it because I always feel better after the exercise. Diet is the most difficult one. You go to a restaurant, you look at the menu, and you think, All of this is proinflammatory. What am I going to do? I will, throughout the day, eat avocados and nuts and other things that give me calories and that I know are not proinflammatory, but I can't do that all the time.
Saidha: One doesn't have to be on that diet 100% of the time. Actually, if you get to 60% of the time, that's generally sufficient. Having MS shouldn't mean that you're not having any fun and that that's the end of everything, right?
Daily Grind
Saidha: There's still this daily fluctuation, or even a weekly fluctuation, that's happening among many people with MS. Can you maybe speak a little bit about that?
Ellington: It begins with me lying in bed in the morning. And I think, once I get out of bed, I'm going to feel a little bit of weakness in my legs and some numbness and tingling. But it'll be fine for maybe an hour or two. Then I go to work, sit at my desk, and I notice the pain and tingling increasing.
Some of that is due to inactivity, sitting at my desk. The pain increases. I really look forward to my 3:30 PM dose of baclofen and gabapentin. And I get busy after work and the symptoms kind of subside until later in the evening, when they get worse. I can't wait to crawl in bed. And I fall fast asleep, but then I wake up in the middle of the night, typically with symptoms.
I feel probably a tinge of depression when I'm in bed in the morning and I realize that this is as good as it's going to be, and I'm going to feel like crap the rest of the day.
Saidha: I can't imagine the challenge of that kind of day-to-day fluctuation, and listening to you describe it, this repeating cycle, it's similar to a Groundhog Day type of thing.
Ellington: There's also a fluctuation not just daily, but maybe weekly or monthly — this up-and-down that repeats; it may go down for a period of weeks, and sometimes maybe it returns to that baseline level. Other times it feels like it's there and then may go further down. And that's when this period of uncertainty for me really is at its darkest.
Vital Contact
Ellington: But being able to express it the way I'm expressing it here, I don't think I've quite done in these messages because I don't want to waste your time.
Saidha: Well, you're never pestering me. It's important to not, on the patient side, ever feel like you're pestering your provider because it doesn't work like that. That’s part of the challenge of this condition. It’s really difficult.
Ellington: Thank you.
Saidha: We have a plan in place. We can act upon it through the patient portal if there's an issue. Reach out through the patient portal.
Ellington: There was one occasion where I met with your physician assistant in person. And that was super helpful, to help me put together things in my head and have her explain things in a way that I'd never be able to discern from the internet or that would take forever in portal messages.
Improved Outlook
Saidha: I'm curious about how much you have gotten used to the diagnosis and what it was like, and what it's still like grappling with this.
Ellington: When I was first diagnosed, in my mind, what I knew about MS was that it would ultimately lead to me being in a wheelchair, and that was devastating. My mother would say to me, "Well, you need to move into a two-bedroom flat instead of this house with all these stairs." I realized that if I moved into a two-bedroom flat, I would never walk stairs. Therefore, I would get weaker.
So my strategy has been: I'm going to push myself. I'm going to set goals for myself. I'm going to do things that maybe people would say were not a good idea.
Saidha: Actually, I think taking that attitude of “I'm not going to let this diagnosis hold me back” actually is a form of treatment.
I have no data to support that statement. When somebody is being diagnosed, I typically say, "Don't let this diagnosis change any of the goals or plans that you had."
Well, I've really been enjoying this conversation. We've obviously, over time, developed a very nice and good relationship with one another.
Ellington: Thank you. I've appreciated the opportunity to sit here with you today. I appreciate your insights, and I'll certainly look forward to meeting you in person in a few months. Thank you so much.
Saidha: Thank you.
