In the third segment of the “Pushing Back at MG” webinar, panelists discuss how to effectively coordinate with doctors when crafting and executing a care plan. Topics include how to track symptoms at home for doctors’ review, and what initial conversations can build a strong relationship between providers and MG families when the two meet.
In the next segment, our panelists respond to questions submitted by the MG community. You can watch all the highlights from the webinar here.
For other MG resources, visit the Myasthenia Gravis Foundation of America (MGFA):MGFA plays an important role in strengthening the MG community — empowering patients and caregivers through education, advocacy, and connection, and contributing to global efforts that raise awareness and advance research.
Transcript
Shawna: We’re going to jump right into segment three and how to partner to craft your treatment plan. And it’s all about how you speak to your care team. I know many of us go in, and we’re frustrated because we’re not getting the answers or the medications aren’t working, or we are surviving, not living or thriving.
And that’s frustrating. And when we go into these appointments — I know I was at first — you become very accusatory and very like, I want answers, you’re not doing anything, and now you’re creating something where your provider may feel defensive.
And we don’t want that. We want a partnership so that, as Doctor Howard said, you win because they become invested in you just as much as you’re invested in your own outcome. So, Vanita, how do you effectively describe — Ascribe — your day-to-day fluctuations for your symptoms to your care team? And what tools or methods do you use to track how those symptoms are between your visits?
Vanetta: Um, so I have switched care teams, um, because I’ve had this disease for quite some time. And it’s funny because, like, the — the neurologist that I have now, she was actually a resident when I was diagnosed. And now she’s running the clinic, and now she’s my neurologist. So, she actually saw me grow up. Um, so, you know, for me, it’s been kind of — it’s been smooth because she knows me.
Um, but to answer your question, I feel like, um, in the beginning, because I was so young, it was the whole idea of advocacy — that wasn’t something that was prevalent during my time. Right. So, it’s like the doctor knows best, and it — there was never, like, this idea that your doctor is your partner in this. It was always like, your doctor is here to tell you what to do, and y
ou are to do it or you die. No, but you are to do it. Right.
And, you know, it wasn’t until I got a little bit older, and it wasn’t until, you know, companies and organizations started having, like, these patient-facing advocacy programs and initiatives, where I learned that — huh — it is supposed to be a partnership. And this is something that we plan together.
Right. It’s a plan. A plan is something that you put together. Right? And I think once I changed my perspective, I started advocating a little bit more for myself and becoming, um, a little bit more vocal about how I am feeling, because there were times where I was showing up to my appointments, and I’m just like, why am I even telling him this? Because he’s — well, he’s going to say is, it is what it is.
You have myasthenia gravis. You have to learn to live with it. Right? That was always the conversation, like, oh, you should be happy. That — perfect example, like, I had the thymectomy. And for me, I thought that after having my thymectomy that, OK, within, like, six months, maybe 12 months, I will be, at the very least, symptom free. And six months came, 12 months came, 18 months, two years. And I’m still very symptomatic. I’m having crisis after crisis, and I didn’t understand why.
And I remember, at one point, I had a provider tell me, well, you should be happy because I have patients that — they’re not working, and they’re not in school. And, you know, you had the thymectomy, but, look, you can still go to school, and you can still do this. So, you know, and I spent many, many years believing that, well, this is it. Like, I should just be happy with what I — and to your point, Shawna, it — the conversation was never about thriving. It was about symptom management. Right.
But then I realized that, number one, I have to speak up for myself. And number two, you know, to be perfectly honest, my provider works for me. My insurance company pays them to treat me.
And so, if I did a bad job at work, I’m getting fired. And if my provider is doing a bad job or, in my opinion, if he’s not doing — he or she is not doing a great job supporting me — thank God Almighty that we are living in a world where we have access now to the resources to be able to switch to a care team that works for us and to have a provider.
And there are very few and far between. But, you know, there are really good — there are really great neurologists out here that will listen to you and that are invested in your health and in your success. And I had to — I switched providers at one point, and it’s one of those things, like, the grass is always greener. And I realized, you know what? This is not for me — like, as — as many, you know, titles as you have behind your name and, you know, all the accolades you have. We don’t have a good working relationship.
With the neurologists that I have now, it’s amazing because she has encouraged me to take notes. You’re only here with me for an hour once every three months. When you’re not with me, take notes, because brain fog is real, you know? And unfortunately, you know, we become very bad historians when we’re going through these crises, and so we forget.
And then, you know, we spoke about this one time — I spoke about this in a support group — that, you know, you get in front of your doctor, and it’s like you glaze over, and it’s just like, oh, shoot, what about all this stuff I meant to tell her? And you walk out of the appointment, like, oh, my goodness. So, I find that keeping a journal has been very helpful.
Um, I do use AI tools to now track, um, my symptoms because it’s easy to recall. So, for instance, something like copilot — if I’m — I can speak into copilot even when I don’t have the dexterity to type. I can speak into copilot and say, hey, today I wasn’t feeling very well. This is how I felt at this time. And the great thing about tools like Copilot or ChatGPT — it can timestamp that conversation. It can recall it into a nice little document you can take with you to your — your visits.
And on top of that, it can even recall — and I had this conversation with someone else — that, hey, can you recall on that date that I left that note, what was the weather in New York? Oh, my goodness, isn’t that crazy? It was — the humidity was, like, 75% that day. Maybe that’s why I was symptomatic. Right? And so, I can take that to my provider.
And it’s so great because I feel like nowadays, you know, providers — they are, like — they are very much invested in getting as much information as they can and learning about this disease. And so now, to Doctor Howard’s point. You do have good providers that are like, you know what, forget the 15 minutes that they expect me to spend with you. Let’s — let’s dig into what’s going on. Let me read the papers that you’re bringing in. You know, and I feel like when you open up that dialog, sometimes you have to initiate it to have a productive conversation with your doctor.
Shawna: Yep, I hear you. How about you, Bruce? How do you describe your day-to-day fluctuations to your care team?
Bruce: Well, what I do — because I’m ancient — I use — I use my phone, my iPhone memo, uh, app.
Shawna: That’s not ancient.
Bruce: So, I go on there, and I’ll — if something happens, I — I put it on there right away. And then I just keep a running list because me — if I go in there blank with nothing, I have nothing. I don’t remember what I did for breakfast, let alone what I did six days ago, a week ago. So, yeah, I write it on the memo. I — I’m — I have copilot, I’ve seen it. I may start looking into that, but, um, that — that works for me.
Yeah, I journal — not a journal, but I write down the notes of what’s happening. Um, and then I — I have to say, I was blessed from the moment I was diagnosed by, uh, my first neurologist, Doctor Villasana. He — from him, then he retired. And then I had another, uh, young guy who was only in the area for a couple months, and then he moved back to Tennessee. And then the doctor I have now. Excellent. Excellent doctors. I mean, they really took care of me.
They were, um — like I said, the first ten years the medication worked, so I really didn’t see a problem. I went to my appointments, but I really had nothing to report because I didn’t have any of the symptoms popping up. But then, when they did, he was right on it. Doctor Liu was right in there. Um, he — he got me on this new infusion. I don’t know if I can mention the infusion, but, uh, it really is exciting because my speech was getting so bad. And after the first week of the infusion — and I go four weeks, and then time off, and then four weeks — it’s amazing.
The first one, it started clearing up my speech. It started — you know — that. No more tired, double vision. No — you know — it was — it’s amazing. And so, I think we’re working well together. Um, I would like him to come up with a plan for me to go to Hawaii. Um, but until that happens, I’m — I’m stuck in Kennesaw for a while.
Shawna: OK. So, this is going to be for everybody. I want three quick takeaways or things that you do to prepare for an important appointment with a new specialist, or just an important appointment in general. Doctor Howard, when you chime in, if you can include what you’re looking for as far as, um, like, what the — what the patient expects when it comes to, you know, them introducing — or when they are first becoming your patient. So, three big takeaways or primary takeaways for how you prepare for the appointment, or how you wish your patient would prepare. Vanetta.
Vanetta: Um, I — I do the — the notes. I do bring notes. Um, in conjunction with the notes, I take videos because my doctor is seeing me sometimes when I’m feeling great. Um, so I’ll take the video, and I’ll — I’ll prepare, um, like, any questions that I have. I will literally write them down and prepare for it. And, you know, for me, I say a little prayer, you know, just be like, please let my doctor have a great day today so we can have a great conversation. But yes, that’s how I prepare for my appointments.
Shawna: Great, Bruce.
Bruce: Well, prayer is a big one. I pray for the doctor to have good recall and to remember things he was trained in. Um, but also, for me, uh, the note-taking. Um, I try to remember when I had a recent flare-up and then explain that to him — you know, like, what was going on. Was I outside too long in the yard? Was I, you know, not sitting down long enough to rest properly? Um, those kind of things.
Um, I find that when I know I have something going on, I can plan out my day — my regimen — for that. My issue right now is when something pops up, and then I have to do it, and then I know I’m going to have to really just sit back and not do anything for a while because it really drains me. Um, and I explained that to him, and I don’t know what the doctor can do about that. I mean, it’s — that’s just the nature of the beast.
Shawna: How about you, Doctor Howard? What are three things that you wish patients would come to you with when, um, they’re seeing you for the first time?
James Howard, MD: I want to know what their goals are. This becomes a shared decision-making process between, uh, you as the patient and I as the treating clinician. So, where do you want to be? What — what’s your overall goal? I want to have a sense of what your history and course have been available. Medical records are extremely helpful.
Uh, chronology of — of how the disease has evolved. And I want a second person there who can be eyes and ears, uh, for the material that we, uh — we discuss. Uh, so those would be the three things. And, you know, they can always be expanded.
But this has been an evolution. When I started in the business 55 years ago — 50 years ago — all I cared about is getting you out of the home. I didn’t care about your side effects. We didn’t have anything to treat you with. Um, and it was an unknown disease to virtually the entire medical community. Um, and it’s still a very rare disease, although there are elements of pharma that have this on, um, Super Bowl ads and everything else.
But to me — they can be criticized by some people — but they have brought awareness to the general American individual. Uh, and that’s been huge, uh, to — to make people aware of what this — this disease is and what it can do and what we can do now as we evolve. I wanted you better, but I wanted you to have little side effects.
And then it evolved even further that, uh, we want you in clinical remission, uh, with little side effects. And now the whole community is starting to change. We want you in remission. We want little side effects, but we want durability of response to the treatments that we give.
Can I give you 12 months disease-free before you have to be treated again? Or 18 months, or two years? I mean, these are the goals, and I think we can do this, um, with what we have in the pipe. So, this has not been a static process. And, uh, as we’ve come along, we’ve learned about the disease. We — we’ve realized the frustrations and the magnitude of the impairment of quality of life.
One of the difficulties we face is that there are these groups that do health economics, and they assign cost benefits to the drugs that we use, and they only look at what’s the cost of — of the drug versus hospitalization, etc. No one takes into account, can I keep you employed for 42 weeks rather than 20 weeks? That’s a huge societal cost. What’s the cost of you being able to go out and do a round of golf with your grandchildren? I mean, we can’t put a price on that.
And, uh, what’s the cost of all the adverse events that I give you because of the treatments that I’ve used? I put you on high doses of prednisone. You gain 50 pounds, you get diabetes. There’s a lifetime cost to that that now has to be borne. And so, as we look at our new drugs, we want to dispense with all of that.
Uh, we want things that are — that are, uh — there’s nothing free. So, everything’s going to have a side effect or potential side effect. But we want to minimize that. We want durability of response. And I need you as a partner. You need me as a partner to accomplish this.
Shawna: Fantastic. It’s — the treatment is just as dynamic as the disease itself and continues to grow and evolve.
