The panel reflects on how they learned to recognize their own warning signs of an MG flare, the importance of tracking symptoms and triggers, and knowing when to contact a healthcare provider or seek emergency care. They also discuss recovering safely after a flare, avoiding the temptation to “push through” worsening symptoms, and creating personalized strategies that help prevent a flare from progressing into a myasthenic crisis.
You can watch all the highlights from the webinar here.
Transcript
Meredith O’Connor: Alright. So last, but certainly not least, let’s have a chat about MG flares. So, certainly, we know that MG can wax and wane and fluctuate day to day, hour to hour, right? But then there are actual flare days, the days where your symptoms are worse than usual baseline, so …
And I think managing those flares are one thing. What is also just as important is being able to recover from them safely. And so … Kathy, let’s start with you, and then we’ll go back to Jasmine. You know, how do you know when this quote-unquote storm of symptoms is coming? Like, how do you kind of … do you anticipate when a flare is coming, and what does that look like for you?
Kathleen Timothy: I definitely anticipate it’s usually, I have a hard time holding up my head. It gets that wobble, and definitely more trouble with swallowing. I have bulbar symptoms when it gets … when I’m getting a flare. And so, I have had multiple crises that involved intubation, so I watch that very carefully. You know, it’s a flare that’s going to turn into a crisis,
or is a flare, which can be just as scary, you know, and just as debilitating. So I do watch for my … my warning signs. And then I’m in immediate contact with my neurologist to see what we can do to hopefully prevent a hospitalization.
Meredith O’Connor: Right, right. And I think it’s … what you speak to is being aware of what those symptoms are specifically for you, because everyone’s different.
Kathleen Timothy: Go ahead, Kathy. Quite honestly, Meredith, my first MG crisis was, just a few months after I was diagnosed. And I always say, I … I used to say I was MG stupid; now I say I was MG naive. There were plenty of warning signs. I paid attention to them; I know that I would not have made it to the point of intubation, but I didn’t know what those are. So … and I kept pushing through what they were. So, I think that’s one of the things we have to do, is get to know our body, and unfortunately, that takes some time, also.
Meredith O’Connor: Yeah, I feel like even after 20 years, I’m still working on that. So, Jasmine, I think I said I would throw it over to you. I feel like this topic is probably pretty pertinent to you right now, especially after just having gone through a crisis. What … if you don’t mind sharing, or if you’re willing to share, what is sort of those symptoms that, sort of, precipitated all of this?
Jasmine Nathan: So recently when I did go through my myasthenic crisis, so normally mine start with my eyes, so I get a lot of double and blurry vision. So this time, it was a lot more extreme than normal, so … normally, I will get blurry vision or double vision, and … but this particular time, again, it was very, very extreme, like, to the point where I couldn’t really see.
And then in this time, I had vertigo, which is just kind of feels like a dizziness in your head, like, almost, like, to the point where you couldn’t stand up, like, just an offset of yourself. I also kind of experienced where I was having, like, my airway close, and I believe that was, like, maybe the second time I experienced that, because I had, as … Kathy kind of spoke about, in the beginning, I had a myasthenic crisis, and the very first time, when I first was diagnosed, I had a myasthenic crisis, but that’s because I was a little bit naive about having MG, and I thought I could go without a medication. So I was a little bit naive.
So, but yes, my airway kind of closed a little bit, so, wow, in that time frame, I experienced all those symptoms at once, and it was truly a scary experience. Those were … vertigo was kind of something that was a little bit new to me, because I hadn hadn’t experienced that since I was first diagnosed as well. So, I was … I was kind of … I was, like, not kind, I was very scared in the time frame when that happened, and I think what we do have to realize as well is that being … MG being a snowflake, what they call the snowflake disorder, is that everybody is so different, and everybody’s gonna have varying … you know,
symptoms and things that happen to them in many ways. Some may start with your eyes, some may have weakness or, whatever may happen, but, it is all in how you manage and all in how you track it, and I think for me, I normally track most of my symptoms happen during either … it’s gonna be the summer or the winter. So, sometimes worse in the winter, sometimes worse in the summer. So, yeah, it was truly a very eye-opening experience, and sometimes it comes when you least expect it, because I definitely wasn’t expecting it at that time, because I thought I was doing everything right for myself.
Meredith O’Connor: Wow, thank you for sharing that, it’s … very scary, but your truth, and … like you said, it affects everyone so differently, so … and I think, you know, when you talked about, like, sort of the flare, and then going into crisis, I think one of the hardest things, especially at least when I’m coming out of a flare, is understanding that in between a, well, I think I’m feeling better, versus, like, I’m actually better and okay, right? And so, Glenn, I’m curious if and when have you experienced a flare or a crisis? Is there anything you do or recognize within yourself to help you sort of make sense of that in between, or …
Glenn Cutler: I think the key is knowing what your triggers are. Yeah. I mean, I … I … and … the knowledge, and using that knowledge to keep yourself from a position where you’re headed into a flare or a crisis. As we’ve talked about, Jasmine and Kathy both talked about being MG stupid or naive. We all are naive about it until we don’t need to be. I mean, that’s just life. We’re going to be that way, and because of the variable nature of the disease, even long-term diagnosed people can have something new pop up, and you kind of think, well, this might be my myasthenia, but I’ve never had this before, but you know that it can be almost any kind of symptom. So, again, I think it’s important to know what the triggers are.
And accommodate yourself. Don’t push through, as Jasmine said, she was going to try to push through some symptoms and just get on the other side of it. You’re not gonna push through a myasthenic weakness. You’re gonna have to stop and recognize what’s happening and accommodate that in whatever way works for you, whether that’s stopping, or resting, or some new medication, or a different medication, and you can’t be afraid to reach out and say, “This is what’s going on with me. I’m not sure I fully understand it either, but I need some help getting through.”
Meredith O’Connor: So, two things I took away from your, you know, what everything was just said, is that it’s recognizing patterns and triggers, and within yourself, and keeping track of those. And two, I think is really being honest with yourself and others when some of those more serious symptoms are arriving, and being planful during those situations. So …
let’s go ahead … we’re running out of time here, so I just want to make sure that we cover all of this. So let’s move away from this whole idea of memory lane and relying on our memory, right? And talk about what’s actually sustainable. Again, not going to go through all these verbatim, but some tactics that are worth considering when managing flares, excuse me, is keeping a log, having some sort of system that allows you to understand the symptoms you’re experiencing, you know, when you’re experiencing them, maybe associating them with things that you already do in your daily living.
Writing a note or a voice memo, right? Sometimes our speech is impaired, sometimes our muscle strength to write is impaired. Either way, I think being able to document it lifts that burden of relying on your memory entirely. And lastly, I think what’s helpful to remember, too, so that you’re not constantly focusing on, like, okay, there’s this thing called crisis, and I know I’m gonna have it, but no, it’s not about that, right? It’s about tracking patterns and knowing your body before any of that happens, so that you can prevent it from happening.
So, of course, there is the possibility and the reality that a crisis could happen, and it’s important to recognize those symptoms that may qualify the need for emergency medical attention. Again, we are not medical professionals, but if you’re struggling to swallow, struggling to breathe, or having severe weakness in the neck, you know, those are all indications that emergency medical help is most likely needed.
So seek care immediately if you’re going through any of those things. Again, please consult your doctor and your primary provider that focuses on MG, when discussing these things. All right, so before we wrap up here, I do want to open the Q&A to all those who are watching and listening right now. I know that we only have, like, one or two minutes.
So if there’s any … let me see here … if there’s any questions … and panelists, by all means, if you can see in the chat, too. Oh, let’s see, okay. I find that when I’m bordering a flare and driving, I wear sunglasses to save energy. I put Kara Park, it likes to give lakes a break. Great tip, great tip. When fatigue does not resolve by resting and sleeping, what do you do? Head is too heavy, and I stay at home. I am old and haven’t have had MG for decades. Does anyone want to speak to that? When fatigue doesn’t resolve by simply resting and sleeping? How do you handle that? Whether that’s emotionally, practically. Any of you guys have tips on that?
Kathleen Timothy: Meredith, I think that if you can’t resolve that with rest after just a couple of days — if you can even let it go that long — I would definitely be in contact with your neurologist, because it may require that they need to do something with medication. Because really, with resting, MG should get better, but if it’s not, then definitely it’s a call to the neurologist, and sooner rather than later.
Meredith O’Connor: Yeah, absolutely. Absolutely. Let’s see here … if there’s anything that pops out at you guys, by all means, feel free to chime in. I’m just trying to go through these as best as I can, because there’s so many. And again, if we can’t get to your questions, then we’ll certainly try to do so following this, once this is posted.
Let’s see here. Meditation, always a good tip. Yep. Prednisone, yes, all good stuff. All right, well, in that case, I’m going to … because I still want to make sure that we conclude this appropriately. So, you know, that concludes our conversation for today. As a final takeaway, I think you know, let’s all remember that living with myasthenia gravis independently doesn’t necessarily mean we’re doing everything on our own, right? I think that’s the biggest learning curve, is about being in tune with your body, being intentional, having a plan, and … as we’ve heard from everyone today, is letting the people around you in.
So, thank you to each of you, each of our panelists, for showing us what that looks like. As a reminder, if you take the survey, please know that your answers will help build the kinds of resources and support this community deserves, so if you have the opportunity, please take the survey. Again, thank you for being here. Thank you for allowing me to moderate this discussion. I’ve enjoyed it so much. Stay safe, and we will all see you next time. Take care.