00:00:09
Speaker 1: Welcome to the first episode of a new season of Untold Stories Life with a severe autoimmune condition. This season is especially exciting to me because we're opening the conversation a little wider beyond just MG and CIDP and bringing together voices from the myocytis and IGAN communities. In future episodes, we'll be talking more openly about the experiences so many people share, even when the diagnosis is different. When we listen to each other and learn from one another, it helps us feel seen as we move forward. Today, we're starting with one of the most common MG symptoms that can have a profound impact on people's lives. Our guest, Jayshan, is living with MG with ocular symptoms. His story helps us understand how common ocular symptoms can affect everyday life, and why speaking up about their impact can be an important step toward finding the support and care you need. I'm excited for you to meet him. Hi, Jay, Thank you so much for your sharing your time today to discuss your MG journey. Perfect.
00:01:15
Speaker 2: Thanks for having me so Jay.
00:01:16
Speaker 1: Can you take us back to when you first noticed changes with your eyes? What were some of those early symptoms?
00:01:23
Speaker 2: Like the early symptoms I would say, like I said I started when hours roughly around twenty I'm thirty seven.
00:01:28
Speaker 1: Now.
00:01:29
Speaker 2: The big symptom that really got me kind of started on this journey was when I turned about twenty eight. It was said it started at about twenty, but it was we didn't know what it was. But at twenty eight, I was driving to the mall and all of a sudden, you know, I'm taking this hour fifteen minutes, hour and thirty minute trip, and then next to you know, my left eye started drooping. You know, I started slowly closing as I was going to the mall, and I'm like, I'm an hour and a half away from my home. You know, I'm kind of stuck, like what is this? And then I started feeling week so I kind of stopped at the mall, you know, came my mom, like, I think we're going to be I think I need a minute. Yeah, I think I might need a minute. I think I want to stay here for a little bit. And I ended up walking around them all for about five hours until I was able to kind of really get going and I was able to feel a little bit more confident body wise to get into the car and drive home. So I made it home and trying to drive home with partial vision in one eye is not fun. But I was able to make it home, and that next day we kind of went on our journey to figure out what was going on. But that was the first moment that it really was like this is here.
00:02:38
Speaker 1: To stay, because, like you said, you had some of these symptoms for years before that, and can you tell me what it was like at that time when you were trying to figure out what was happening.
00:02:49
Speaker 2: It was frustrating. I had a primary optometrist who I saw because I wear glasses, so I would talk to my optometrists and he was like, well, it seems psych allergies. Their eyes are healthy, there's nothing going on. Let's try this eye drop. And then after a week or two it would go away, and we're like, what's got to be the eye drops?
00:03:08
Speaker 1: Right?
00:03:08
Speaker 2: So then we just kind of took it as it's almost like clockwork. It would come around the summertime.
00:03:14
Speaker 1: Okay, so yeah, allergies made sense, right.
00:03:16
Speaker 2: Yeah, it made sense, you know, to have allergies. So we're thinking, oh, it would come around the summertime, it's no big deal. And then you know, as a few years go by, it would come just out of nowhere, and then I would kind of try to hide it. And it was more of I worked in a retail setting, and you know, I was working with tablets, I was working with electronics, and I would kind of have to like almost like hold my head up to try to keep my eye from closing while I was trying to work on different things. And it got to the point where I was just like, Okay, we need a strong allergy medicine. So we tried that, but the main thing was the eye was just heavy. The I think that was the first thing because the ocular MG, it starts off with the heavy eyelids, the blurred vision, things of that nature.
00:04:00
Speaker 1: With Jayshawn's describing isn't uncommon. Many people living with MG report ocular symptoms like double or blurre division. Those can be the first signs that someone may have MG, even if they haven't experienced other symptoms yet. And So while that was happening and you're sort of experiencing those symptoms, were there moments when those changes that were happening to your vision forced you to adjust your routine, like needing help at home or changing how you moved about your day.
00:04:30
Speaker 2: I'm a big movie, TV show, person gamer. Especially at that time, I was in my mid to late twenties, and I couldn't really stay playing a game or watching a movie because my eye would just stay closed and I would have to kind of sleep to rest it, and it would get frustrating. Is because in my case, I can deal with the pain and the weakness, I can go to sleep, But when you wake up and you're constantly blurred vision, your eyes droopy, it's hard to kind of get past that. You know, It's kind of like it's like you kind of need to see. Yeah, you're constantly reminded that there's something going on. So you kind of think back to that and it's more of a it definitely changed my life. Right at the beginning, it was more of a well, I'm gonna have to cut back gaming. I'm gonna have to adjust the brightness on my TV. I'm going to have to change the motion blur on you know these gamings that I'm playing, because some of them they do the quick movement and then they do like the movement like detail. You have to change things like that. So, uh, it changed my life dramatically right at the beginning. Yeah, gaming doesn't seem like a dramatic change, but someone who uses that as an escape, it definitely made a big change for me for sure.
00:05:42
Speaker 1: Yeah, so you had to figure out ways to be able to adjust. And so after that experience, you went to see a doctor about those ocular symptoms that you were having.
00:05:51
Speaker 2: Yeah, we went to about two to three local doctors, from optometrists and two opthalmologists. We saw them and they were kind of baffled by what was going on. It was still the hole. Your eyes are healthy, your eyes are drooping, it's just this left eye. We don't know what was happening. And they were like, no, we need to send you forty five minutes up the road to kind of like the more well known teaching hospital. So they sent me to the er and I'll never forget it because I was there for nine hours, oh gosh, and they did every test. They had everyone in the building. I feel like, come in in a neurologists department.
00:06:32
Speaker 1: Come over here, look at this guy.
00:06:33
Speaker 2: Yeah, come look at this guy. You know, I'm like, you know, neurologists, catskins, mries, you name it. They didn't know what was going on, and after that, I still got no answers. It was like, go home, We're going to set an apartment for a neurooptthalmologist. And I saw him and he was the first person to say I'm going to go in left field and we're going to try MG. And I say, He's like, it's so rare. I have no idea and ended up being MG. He gave me the final diagnosis and I'll never forget it was April twentieth of twenty eighteen, was when it actually happened. And I can remember exactly where we were standing, exactly, you know, the phone call I made. I can picture it in my head, the moment that I kind of got a relief but also a fear of this is my life now, you know?
00:07:27
Speaker 1: Yeah, I mean you were in your late twenties right at that time, yeah, twenty twenty eight And so how did getting that information? I mean you're saying that you can, you know, still see that moment in your mind? How did that diagnosis change how you saw yourself?
00:07:42
Speaker 2: My whole life changed because I was literally a person that went from thinking they're relatively healthy to you have to watch who you're around because you are more likely to get sick than the average person. Because now your immune system is physically being suppressed.
00:07:58
Speaker 1: So in addition to dealing with your symptom, you have to think about who am I around, how am I gonna protect myself?
00:08:03
Speaker 2: Yeah, like a cold for me last, you know, three weeks, you know, instead of a week. So I just I was just like, okay, all right, and I tried to kind of think positive because I'm that type of person where I'm just like but at that beginning, it was more of like geez, really, you know, and this this me Now, it took a while to get here.
00:08:23
Speaker 1: And so I mean you mentioned that on one hand, getting the diagnosis was kind of a relief. Can you tell us more about that, especially after you had so many years of those symptoms with unclear answers. Yeah, it was a relief, but it was also a little scary. It was, Okay, why is this happening to me? Like what did I do to, you know, deserve this type of thing. I'm just trying to live my life. I hadn't done things. There's things I wanted to do.
00:08:49
Speaker 2: And then when someone tells you like no, you know, you have this irreversible thing you're going to have for the rest of your life. We can try to maintain it. But at the same time, it's like those things you wanted to do, let's put them on the back burner for now, and let's just kind of wait and see, you know, where we go from there. And unfortunately I'm still waiting.
00:09:12
Speaker 1: That mix of relief and fear after a diagnosis is something many people living with rare diseases experience. Once again, even when the conditions are different, the emotional journey can feel very much the same. Yeah, so it's a lot to process, it is, and it sounds like it's you're still processing it.
00:09:31
Speaker 2: Oh yeah.
00:09:32
Speaker 1: Yeah, Like you said, like here's something you know, you've never heard of and that you're going to have to, you know, just change the way you live your life. Yeah, thinking about that, for someone who doesn't know much about it, what would you say are some of the biggest ways it impacts your life?
00:09:47
Speaker 2: So the biggest way it impacts my life is the blurred slash kind of like fuzzy vision. So when I'm watching TV, or I am in a car, or any type of fast movement, you kind of have to close your eyes and just kind of like, okay, eyes slow down, because when things are moving very fast, you kind of miss things, so you have to try to almost try to rewind your life. You know, it's not always necessarily the same concept as like it's easy to rewind a TV show or rewind you know, a pause a game, but in real life, it's like when something happens super fast, it's like, Okay, I might have missed this, or I might have missed that. You know. I always have to keep in mind that the better my eyes are is usually when I'm rested. So when I wake up, if I take a nap, if I need to, because I'm still able to drive in the daytime, and I take routes and roads that I know because once again blurred vision. It's not to the point where I can't see like faces or anything of that nature. But you have to be careful to not drive a night, to make sure that you're comfortable where you're going, to make sure that it's an absolute necessity of where you're going, and if you have some want to take you just kind of have that mindset because when you're very independent like I was, it's very hard to ask for help.
00:11:06
Speaker 1: So the point is that you figured out some of these tools to you know, make that work for you.
00:11:11
Speaker 2: I definitely did. Yes.
00:11:13
Speaker 1: What were some of the challenges that your family and your friends and even your doctors might not fully understand about living with vision changes like the ones you experienced.
00:11:25
Speaker 2: You know a lot of people tell you just got to put it in the back of your head and just accept it or more of it is what it is, or something of that nature. I'm like, it's easy to say sometimes, but it's hurting my eyes. I can't watch this sort of do this for a long periods of time because it's blur vision and I'm getting a migraine because of it. You know, those are the things that a lot of people don't get because not only is it just the blurred vision of blur vision is almost like a domino effect to other.
00:11:54
Speaker 1: Things I see, like the headaches, and.
00:11:57
Speaker 2: Because the migraines come with it, the the frustration from the migraines come with it. That is not one thing. One thing turns into five things.
00:12:06
Speaker 1: Jay, could you share this story about when you realized you needed to give up your job.
00:12:13
Speaker 2: It was a year actually almost exactly a year after I was told that I had MG. I tried to stay working. I was falling, I was having a hard time reading. I tried to keep it a secret, and I went to Mayo Clinic and they told me that, yeah, you're guaranteed you have what you have. And I called from the hotel and said, after talking to mail clinic, I don't think I can work again. And it didn't hit me until after I went to clean out my locker. It was more of this is it? Like, you know, you always think about retirement. You're like, Oh, I'm going to be able to retire on my own terms. But when you're twenty eight twenty nine year said we can't accommodate what you need us to do. This is it? You know you can't work anymore. It's still to this day it still kind of hits me.
00:13:11
Speaker 1: This is a very difficult situation that people with MG may find themselves in, but not everyone with MG is unable to work. Many people with MG find alternative options for employment or are able to adjust their careers to work with their diagnoses. More advocacy and new treatments are giving MG patients more options each year. Yeah, Jay, you mentioned working closely with a neuroophthalmologist. Correct, Why is having someone who understands the IE related side of MG so important.
00:13:43
Speaker 2: Because they check the misalignment of your eyes, they check the actual health to the nerves. I've talked to a lot of people and they're like, what's a neuro optimologist. Wow? Yeah, I'm like the best thing you can have because that person is one the person who diagnosed me. Two, it's the person that does those funky tests. I don't really know the name of them, but they are something I've never had done through any other place I've ever been to. And they keep the health and they make sure that everything that's ocular related to your MG is being addressed, whether they can address it or not, they lead you in the right direction. So my ocular MG progressing to generalize MG, and that neurooptalmologists was the one who got me over to a neurologist to help more with the generalized symptoms.
00:14:35
Speaker 1: For people living with ocular symptoms of MG, a neuroophthalmologist can play a critical role. They're trained to closely monitor vision and I function, which can make a real difference in how the condition is managed over time. Were there specific things that you did to help your doctors better understand what you're experiencing. Did you do things like tracking your symptoms, taking photos or videos or writing things down what worked for you?
00:15:06
Speaker 2: Actually, the actually had this happen recently. The doctor asked me of what was going on because I hadn't seen me in a couple of days when I was in the hospital, and they were like, so it's been going on. I was like, I can't really explain to you, but I took pictures and the eyes like their eyes bunked and they were like WHOA. I was like, what did I do something wrong? They said, no, I've never had someone do this. I've never had someone go so in depth to actually show me what was happening. So I could really see what was going on. So, you know, I did my recordings, I did my visual pictures because obviously it's always once they come in, everything's fine, right, and when they're not around, everything goes, you know, horrible. So I made sure I document. Oh my gosh, have I used that camera so much over the last eight years. It's like a tool for you, one hundred percent tool for me. And they were just like, wow, you are very in depth. You are very thorough. I said, I really need to be because I've been dismissed so many times and I don't want to have that. I need to have my proof.
00:16:13
Speaker 1: We'll be back with more untold stories after a quick break. As a global immunology company committed to improving the lives of people living with severe autoimmune conditions, Argenics is dedicated to serving the maasthenia gravis or MG community through MG United. MG United was created by Ergenics to empower the MG community by providing the latest information, resources, and support to address the unique ways MG can affect their lives. It also helps you connect with the community and see real stories of real people living with MG wherever you are in your maasthenia gravist journey. MG United wants to help make today a better day. For more information about MG United, visit mgdashunited dot com. And now back to untold Stories. Jay, you mentioned how you love movies and TV and video games. How can you make watching or playing more adaptable so that you can still enjoy your favorite hobbies? Oh?
00:17:27
Speaker 2: Sure? So, for instance, I'm a big zombies guy for Call of Duty and zombies is very dark, very gory. So what I do is I make sure that I turn off motion blur motion blur to where it's like when they move really fast. The screen has a grainy film effect, and I turned that off because it was messing with my eyes. And now that I turn that off, I can actually play longer. Did you even know that that exists? No, I looked it up. My mind was just like, there's got to be something that I can do to make this easier for me. And then also too, if I'm watching something, I turned the brightness down. If it's daytime, I put it on nighttime mode. If it's nighttime, put on daytime mode. You know, I just kind of adjust depending on what I'm watching and what time of the day I'm watching. So it's almost become second nature to me. If I think back to the old me, it was just like turn something on and watch it. Now it's more I kind of adjust based on my surroundings of what I'm doing. I stopped playing games for nine months because I had migraines for nine months stright wow, because my eyes were so bad. But I did it because I don't work, I'm disabled. It was I dealt with it and I had to stop, and that nine months was hard for me because it was something. I don't have hobbies because I can't do a lot and I was my hobby.
00:18:46
Speaker 1: But you were able to come back to it.
00:18:48
Speaker 2: I was able to come back to it because I personally, you know, I went online, Chad GBT, I did everything trying to figure out ways to just make sure that I could do more. You know that. I was like, there's got to be little things that I I could do to make myself be able to do this a little bit more. And it's working so far.
00:19:04
Speaker 1: And you found them.
00:19:05
Speaker 2: Yeah.
00:19:05
Speaker 1: You know, looking back, Jay, what do you wish you had known about advocating for yourself earlier in your journey?
00:19:12
Speaker 2: Being told that what you're feeling is not you know, the traditional symptoms, and I'm like, you know, I've been dealing with this for eight years now. You know, I've had doctors tell me you know more about your condition than I do.
00:19:24
Speaker 1: Wow.
00:19:24
Speaker 2: It's sad, but also empowering that I've learned so much over that timeframe.
00:19:30
Speaker 1: Jayshawn's experience is not uncommon, especially for people with more isolated symptoms like the ocular symptoms of MG. While frustrating, these experiences can also lead to powerful self advocacy. Jashn's story shows that you are the expert in your body, and you are the ultimate authority on what you are experiencing. Jay, what advice would you share with someone who feels like they're not being heard by their doctors.
00:19:57
Speaker 2: You can change who your doctor is. I think some people out there that feel like they're not being heard they think, well, I can't really get anywhere else or I can't really do anything else, so I kind of have to deal with this person and just kind of deal with it. No, there's virtual there's companies out there who do people who have an MG that can actually sit and talk to you with groups. There's people who have different doctors that can give you different information of what they went through and maybe you not even know that you're in the same area. You can have someone come to your house. You can do a lot of different things, and don't always think that you have to settle for that one person.
00:20:34
Speaker 1: Well, it may take time to find the best doctor for you. Once you have that person, they can be a powerful ally. For Jashan, that's his primary care provider.
00:20:43
Speaker 2: The one person that will never ever ever change in my life is my primary care provider because that person is your guide to everything. Without that primary care provider, I would not be able to get some of the tests that I've gotten done, some of the doctors I've gotten done, referrals, the referrals, things of that nature. Because I didn't think of this, and it was just like, how about we go this route? And you know, now it's like family, I've seen my PCP for almost eight years. He's like it's been a constant. Yeah, he's like a constant in my life. And I would go to bad for this guy and need to go to bad for me. Even the nurse that's with him has been in their whole time. It's like when I call and they're just like, man, I was thinking about you. I want you to be able to get through this. When I'm just like, it just feels good that. You know, when you have someone on your side, don't let them go. Whatever you have to do, you stick with that person. But I would say, just for someone going through that, just advocating, just remember that you don't have to stay with who you're with. There are other options out there for you.
00:21:41
Speaker 1: Wow, amazing, and especially like you said, with you know, changes in technology, with telehealth, you know, we have other options that we didn't have just a few years ago. Yes, Jay, you've talked about how technology at home has made life easier for you. What role have those tools played in helping you stay independent and to help keep you moving forward.
00:22:01
Speaker 2: So the most recent thing that I've gotten over the fear of people judging me is walking sticks, because I always get that whole get out of the handicapped parking. What are you doing in a handicap parking?
00:22:13
Speaker 1: Yeah you look perfectly fine.
00:22:14
Speaker 2: Yeah you look perfectly fine. But walking sticks have been a lifesaver. You know, I can move and if I feel like I'm losing my balance, I can just grab onto that walking stick. Having a walker next to my bed, even though I'm not using it around my house, just being able to get up from my bed to be able to just get to a standing position. Also my adjustable bed, depending on what I'm feeling in my arms, my legs, my back, my neck, whatever weakness I have, I'm able to adjust that bed to fit those knees. Because you can adjust based off of how you're feeling that day. You know, if you're feeling a little bit weaker, you can adjust your sleep setting. If you're feeling you know you have another health issue, a grabber, just you know, something a grab if I dropped my peel bottle on the floor. I could use that grab it because I'm not bending over exerting too much energy. I say, yeah, So there's a lot of little things out there with technology. My smart watch has definitely been helpful as well too. You know, I had a fall in the shower and the smart watch was able to ask you fail, you know, are you okay? And the watch is waterproof so you can wear it in the shower. Wow, you can do everything you need. You can actually make phone calls from them usually, So it's very nice to have that that smart watch available for you for sure.
00:23:33
Speaker 1: Wow, and you're already wearing it, it knows if you fell. That's pretty impressive. What did it feel like to eventually connect with other people who really understood what you were going through.
00:23:44
Speaker 2: I can't even really explain the feeling. It just felt great because, like I said, you know, I have my friends, I have my family, and no matter what, they'll never understand one hundred percent of what I'm going through because this is something that I don't wish up my worst enemy to have MG, especially in the early stages, and the fact that having someone who's gone through it, having someone who's active in maybe a myosthenic crisis to where you know, they were just on a ventilator or they just had issues swallowing or anything of that nature. And I've been in that position, and it's able to just hear their story and what they went through and how they got through it and came on the other side. It is just like it's not just me, you know, And I know, I think there's probably a million or less people in the US probably you know, that are going through what we're going through. And the fact that they are someone that I could just talk to and reach out to when I need to and we can kind of we can kind of vent and kind of talk about our struggles together has just been amazing.
00:24:45
Speaker 1: Well, I mean it sounds like Jay that these groups and these people have really built your confidence. Yeah, how has it changed the ways that you even manage your days?
00:24:54
Speaker 2: My days went from very not dark days, but they were more sleep how many hours, like I could count how many hours I was awake that day, And it went to, Okay, there's a meeting that I can come up to, I can talk to or you know, I have this very close friend of mine and she's you know, I always tell how she's she's just changed my life for the better, and she's you know, she listens to me, she talks to me, she doesn't sugarcoat anything, and she's just been amazing. My mom has done a lot for me. Those are you know, two of the people that have done so much for me, because a lot of people don't have anyone besides those groups. And you know, if I have two, three, four people in my life that understanding even though they aren't living it, it definitely helps kind of mitigate some of the issues that I do have. But it's a lot to get through the day to just kind of make sure that I am just making it through the day. People don't realize that even though I don't work, I have a twenty four to seven job. I have to try to get through the day because the motivation that I have now is definitely a lot more than it used to be because I will I'll be honest, there's days where I feel like it's a little much, you know now, But the fact that I didn't lose my spirit, you know, right, and I'm still here.
00:26:16
Speaker 1: You are, Jay, what gives you the most confidence as you keep moving forward.
00:26:22
Speaker 2: This has given me confidence talking with everyone and realizing how much of an impact that I have on people, and going through the meetings and people telling me you helped me so much and you've done you know, even though it might not you might not feel like you've helped me in ways to think of different things. Because I have that technology background. I work for Best Buy for five years, you know, so I know technology. I know you know, I work for AT and T, so I know ways that have helped people. And people have told me like, you've helped me more than you know, and I'm just like, well, thank you, you know. Or people reaching out like we should get dinner, we should do this, we should do that, and I'm like, I realized I had that big of an impact on you. I thought I was just being my goofy self, you know, and people love it. Yeah, people, you know, people love that goofy version of me and I it definitely has made me feel a lot better and it's definitely given me a second wind. It's just helped me in more ways than I can really say.
00:27:19
Speaker 1: Yeah, to just be seen for who you are.
00:27:21
Speaker 2: Just to be seen and because the person that I feel like is seen on the outside sometimes is just not what's really me. And you know, once you get to know me, I'm just this person that just wants to make people happy.
00:27:34
Speaker 1: It's amazing. Jay. Last question, what would you tell someone who's just at the beginning of their MG journey.
00:27:41
Speaker 2: It gets better. The support is there, the technology is there, the medicine is getting better and better. They're coming out with different options for you. Just don't give up. There's so many groups out there, just typing MG groups and you'll find so many people are literally there for you, just like you're their family, because we are a little family, because we're so small, and you're not alone. You're part of a family that you don't even know yet, but you are. You do have a small little family in us, and we can definitely be there for you, no't matter what.
00:28:16
Speaker 1: It's amazing. Thank you so much, Jay.
00:28:18
Speaker 2: Of course, thank you.
00:28:24
Speaker 1: For anyone listening who maybe at the beginning of their journey. I hope Jay Sean's story reminds you that you're not alone and finding the right community can make a powerful difference. That's what the seasons all about, bringing people together, sharing experiences and learning from one another. As we move forward until next time, take Care of Yourself. Untold Stories Life with a Severe autoimmune condition is produced by Ruby's Studio from iHeartMedia in partnership with Argenix and hosted by me Martine Hackett. Our executative producer is Yvonne Shehan. Our producer is Leah Sutherland. This episode was written and produced by Diana Davis. Post production for this season is by Tom Sullivan and Paul Videleins of Audiography
Speaker 1: Welcome to the first episode of a new season of Untold Stories Life with a severe autoimmune condition. This season is especially exciting to me because we're opening the conversation a little wider beyond just MG and CIDP and bringing together voices from the myocytis and IGAN communities. In future episodes, we'll be talking more openly about the experiences so many people share, even when the diagnosis is different. When we listen to each other and learn from one another, it helps us feel seen as we move forward. Today, we're starting with one of the most common MG symptoms that can have a profound impact on people's lives. Our guest, Jayshan, is living with MG with ocular symptoms. His story helps us understand how common ocular symptoms can affect everyday life, and why speaking up about their impact can be an important step toward finding the support and care you need. I'm excited for you to meet him. Hi, Jay, Thank you so much for your sharing your time today to discuss your MG journey. Perfect.
00:01:15
Speaker 2: Thanks for having me so Jay.
00:01:16
Speaker 1: Can you take us back to when you first noticed changes with your eyes? What were some of those early symptoms?
00:01:23
Speaker 2: Like the early symptoms I would say, like I said I started when hours roughly around twenty I'm thirty seven.
00:01:28
Speaker 1: Now.
00:01:29
Speaker 2: The big symptom that really got me kind of started on this journey was when I turned about twenty eight. It was said it started at about twenty, but it was we didn't know what it was. But at twenty eight, I was driving to the mall and all of a sudden, you know, I'm taking this hour fifteen minutes, hour and thirty minute trip, and then next to you know, my left eye started drooping. You know, I started slowly closing as I was going to the mall, and I'm like, I'm an hour and a half away from my home. You know, I'm kind of stuck, like what is this? And then I started feeling week so I kind of stopped at the mall, you know, came my mom, like, I think we're going to be I think I need a minute. Yeah, I think I might need a minute. I think I want to stay here for a little bit. And I ended up walking around them all for about five hours until I was able to kind of really get going and I was able to feel a little bit more confident body wise to get into the car and drive home. So I made it home and trying to drive home with partial vision in one eye is not fun. But I was able to make it home, and that next day we kind of went on our journey to figure out what was going on. But that was the first moment that it really was like this is here.
00:02:38
Speaker 1: To stay, because, like you said, you had some of these symptoms for years before that, and can you tell me what it was like at that time when you were trying to figure out what was happening.
00:02:49
Speaker 2: It was frustrating. I had a primary optometrist who I saw because I wear glasses, so I would talk to my optometrists and he was like, well, it seems psych allergies. Their eyes are healthy, there's nothing going on. Let's try this eye drop. And then after a week or two it would go away, and we're like, what's got to be the eye drops?
00:03:08
Speaker 1: Right?
00:03:08
Speaker 2: So then we just kind of took it as it's almost like clockwork. It would come around the summertime.
00:03:14
Speaker 1: Okay, so yeah, allergies made sense, right.
00:03:16
Speaker 2: Yeah, it made sense, you know, to have allergies. So we're thinking, oh, it would come around the summertime, it's no big deal. And then you know, as a few years go by, it would come just out of nowhere, and then I would kind of try to hide it. And it was more of I worked in a retail setting, and you know, I was working with tablets, I was working with electronics, and I would kind of have to like almost like hold my head up to try to keep my eye from closing while I was trying to work on different things. And it got to the point where I was just like, Okay, we need a strong allergy medicine. So we tried that, but the main thing was the eye was just heavy. The I think that was the first thing because the ocular MG, it starts off with the heavy eyelids, the blurred vision, things of that nature.
00:04:00
Speaker 1: With Jayshawn's describing isn't uncommon. Many people living with MG report ocular symptoms like double or blurre division. Those can be the first signs that someone may have MG, even if they haven't experienced other symptoms yet. And So while that was happening and you're sort of experiencing those symptoms, were there moments when those changes that were happening to your vision forced you to adjust your routine, like needing help at home or changing how you moved about your day.
00:04:30
Speaker 2: I'm a big movie, TV show, person gamer. Especially at that time, I was in my mid to late twenties, and I couldn't really stay playing a game or watching a movie because my eye would just stay closed and I would have to kind of sleep to rest it, and it would get frustrating. Is because in my case, I can deal with the pain and the weakness, I can go to sleep, But when you wake up and you're constantly blurred vision, your eyes droopy, it's hard to kind of get past that. You know, It's kind of like it's like you kind of need to see. Yeah, you're constantly reminded that there's something going on. So you kind of think back to that and it's more of a it definitely changed my life. Right at the beginning, it was more of a well, I'm gonna have to cut back gaming. I'm gonna have to adjust the brightness on my TV. I'm going to have to change the motion blur on you know these gamings that I'm playing, because some of them they do the quick movement and then they do like the movement like detail. You have to change things like that. So, uh, it changed my life dramatically right at the beginning. Yeah, gaming doesn't seem like a dramatic change, but someone who uses that as an escape, it definitely made a big change for me for sure.
00:05:42
Speaker 1: Yeah, so you had to figure out ways to be able to adjust. And so after that experience, you went to see a doctor about those ocular symptoms that you were having.
00:05:51
Speaker 2: Yeah, we went to about two to three local doctors, from optometrists and two opthalmologists. We saw them and they were kind of baffled by what was going on. It was still the hole. Your eyes are healthy, your eyes are drooping, it's just this left eye. We don't know what was happening. And they were like, no, we need to send you forty five minutes up the road to kind of like the more well known teaching hospital. So they sent me to the er and I'll never forget it because I was there for nine hours, oh gosh, and they did every test. They had everyone in the building. I feel like, come in in a neurologists department.
00:06:32
Speaker 1: Come over here, look at this guy.
00:06:33
Speaker 2: Yeah, come look at this guy. You know, I'm like, you know, neurologists, catskins, mries, you name it. They didn't know what was going on, and after that, I still got no answers. It was like, go home, We're going to set an apartment for a neurooptthalmologist. And I saw him and he was the first person to say I'm going to go in left field and we're going to try MG. And I say, He's like, it's so rare. I have no idea and ended up being MG. He gave me the final diagnosis and I'll never forget it was April twentieth of twenty eighteen, was when it actually happened. And I can remember exactly where we were standing, exactly, you know, the phone call I made. I can picture it in my head, the moment that I kind of got a relief but also a fear of this is my life now, you know?
00:07:27
Speaker 1: Yeah, I mean you were in your late twenties right at that time, yeah, twenty twenty eight And so how did getting that information? I mean you're saying that you can, you know, still see that moment in your mind? How did that diagnosis change how you saw yourself?
00:07:42
Speaker 2: My whole life changed because I was literally a person that went from thinking they're relatively healthy to you have to watch who you're around because you are more likely to get sick than the average person. Because now your immune system is physically being suppressed.
00:07:58
Speaker 1: So in addition to dealing with your symptom, you have to think about who am I around, how am I gonna protect myself?
00:08:03
Speaker 2: Yeah, like a cold for me last, you know, three weeks, you know, instead of a week. So I just I was just like, okay, all right, and I tried to kind of think positive because I'm that type of person where I'm just like but at that beginning, it was more of like geez, really, you know, and this this me Now, it took a while to get here.
00:08:23
Speaker 1: And so I mean you mentioned that on one hand, getting the diagnosis was kind of a relief. Can you tell us more about that, especially after you had so many years of those symptoms with unclear answers. Yeah, it was a relief, but it was also a little scary. It was, Okay, why is this happening to me? Like what did I do to, you know, deserve this type of thing. I'm just trying to live my life. I hadn't done things. There's things I wanted to do.
00:08:49
Speaker 2: And then when someone tells you like no, you know, you have this irreversible thing you're going to have for the rest of your life. We can try to maintain it. But at the same time, it's like those things you wanted to do, let's put them on the back burner for now, and let's just kind of wait and see, you know, where we go from there. And unfortunately I'm still waiting.
00:09:12
Speaker 1: That mix of relief and fear after a diagnosis is something many people living with rare diseases experience. Once again, even when the conditions are different, the emotional journey can feel very much the same. Yeah, so it's a lot to process, it is, and it sounds like it's you're still processing it.
00:09:31
Speaker 2: Oh yeah.
00:09:32
Speaker 1: Yeah, Like you said, like here's something you know, you've never heard of and that you're going to have to, you know, just change the way you live your life. Yeah, thinking about that, for someone who doesn't know much about it, what would you say are some of the biggest ways it impacts your life?
00:09:47
Speaker 2: So the biggest way it impacts my life is the blurred slash kind of like fuzzy vision. So when I'm watching TV, or I am in a car, or any type of fast movement, you kind of have to close your eyes and just kind of like, okay, eyes slow down, because when things are moving very fast, you kind of miss things, so you have to try to almost try to rewind your life. You know, it's not always necessarily the same concept as like it's easy to rewind a TV show or rewind you know, a pause a game, but in real life, it's like when something happens super fast, it's like, Okay, I might have missed this, or I might have missed that. You know. I always have to keep in mind that the better my eyes are is usually when I'm rested. So when I wake up, if I take a nap, if I need to, because I'm still able to drive in the daytime, and I take routes and roads that I know because once again blurred vision. It's not to the point where I can't see like faces or anything of that nature. But you have to be careful to not drive a night, to make sure that you're comfortable where you're going, to make sure that it's an absolute necessity of where you're going, and if you have some want to take you just kind of have that mindset because when you're very independent like I was, it's very hard to ask for help.
00:11:06
Speaker 1: So the point is that you figured out some of these tools to you know, make that work for you.
00:11:11
Speaker 2: I definitely did. Yes.
00:11:13
Speaker 1: What were some of the challenges that your family and your friends and even your doctors might not fully understand about living with vision changes like the ones you experienced.
00:11:25
Speaker 2: You know a lot of people tell you just got to put it in the back of your head and just accept it or more of it is what it is, or something of that nature. I'm like, it's easy to say sometimes, but it's hurting my eyes. I can't watch this sort of do this for a long periods of time because it's blur vision and I'm getting a migraine because of it. You know, those are the things that a lot of people don't get because not only is it just the blurred vision of blur vision is almost like a domino effect to other.
00:11:54
Speaker 1: Things I see, like the headaches, and.
00:11:57
Speaker 2: Because the migraines come with it, the the frustration from the migraines come with it. That is not one thing. One thing turns into five things.
00:12:06
Speaker 1: Jay, could you share this story about when you realized you needed to give up your job.
00:12:13
Speaker 2: It was a year actually almost exactly a year after I was told that I had MG. I tried to stay working. I was falling, I was having a hard time reading. I tried to keep it a secret, and I went to Mayo Clinic and they told me that, yeah, you're guaranteed you have what you have. And I called from the hotel and said, after talking to mail clinic, I don't think I can work again. And it didn't hit me until after I went to clean out my locker. It was more of this is it? Like, you know, you always think about retirement. You're like, Oh, I'm going to be able to retire on my own terms. But when you're twenty eight twenty nine year said we can't accommodate what you need us to do. This is it? You know you can't work anymore. It's still to this day it still kind of hits me.
00:13:11
Speaker 1: This is a very difficult situation that people with MG may find themselves in, but not everyone with MG is unable to work. Many people with MG find alternative options for employment or are able to adjust their careers to work with their diagnoses. More advocacy and new treatments are giving MG patients more options each year. Yeah, Jay, you mentioned working closely with a neuroophthalmologist. Correct, Why is having someone who understands the IE related side of MG so important.
00:13:43
Speaker 2: Because they check the misalignment of your eyes, they check the actual health to the nerves. I've talked to a lot of people and they're like, what's a neuro optimologist. Wow? Yeah, I'm like the best thing you can have because that person is one the person who diagnosed me. Two, it's the person that does those funky tests. I don't really know the name of them, but they are something I've never had done through any other place I've ever been to. And they keep the health and they make sure that everything that's ocular related to your MG is being addressed, whether they can address it or not, they lead you in the right direction. So my ocular MG progressing to generalize MG, and that neurooptalmologists was the one who got me over to a neurologist to help more with the generalized symptoms.
00:14:35
Speaker 1: For people living with ocular symptoms of MG, a neuroophthalmologist can play a critical role. They're trained to closely monitor vision and I function, which can make a real difference in how the condition is managed over time. Were there specific things that you did to help your doctors better understand what you're experiencing. Did you do things like tracking your symptoms, taking photos or videos or writing things down what worked for you?
00:15:06
Speaker 2: Actually, the actually had this happen recently. The doctor asked me of what was going on because I hadn't seen me in a couple of days when I was in the hospital, and they were like, so it's been going on. I was like, I can't really explain to you, but I took pictures and the eyes like their eyes bunked and they were like WHOA. I was like, what did I do something wrong? They said, no, I've never had someone do this. I've never had someone go so in depth to actually show me what was happening. So I could really see what was going on. So, you know, I did my recordings, I did my visual pictures because obviously it's always once they come in, everything's fine, right, and when they're not around, everything goes, you know, horrible. So I made sure I document. Oh my gosh, have I used that camera so much over the last eight years. It's like a tool for you, one hundred percent tool for me. And they were just like, wow, you are very in depth. You are very thorough. I said, I really need to be because I've been dismissed so many times and I don't want to have that. I need to have my proof.
00:16:13
Speaker 1: We'll be back with more untold stories after a quick break. As a global immunology company committed to improving the lives of people living with severe autoimmune conditions, Argenics is dedicated to serving the maasthenia gravis or MG community through MG United. MG United was created by Ergenics to empower the MG community by providing the latest information, resources, and support to address the unique ways MG can affect their lives. It also helps you connect with the community and see real stories of real people living with MG wherever you are in your maasthenia gravist journey. MG United wants to help make today a better day. For more information about MG United, visit mgdashunited dot com. And now back to untold Stories. Jay, you mentioned how you love movies and TV and video games. How can you make watching or playing more adaptable so that you can still enjoy your favorite hobbies? Oh?
00:17:27
Speaker 2: Sure? So, for instance, I'm a big zombies guy for Call of Duty and zombies is very dark, very gory. So what I do is I make sure that I turn off motion blur motion blur to where it's like when they move really fast. The screen has a grainy film effect, and I turned that off because it was messing with my eyes. And now that I turn that off, I can actually play longer. Did you even know that that exists? No, I looked it up. My mind was just like, there's got to be something that I can do to make this easier for me. And then also too, if I'm watching something, I turned the brightness down. If it's daytime, I put it on nighttime mode. If it's nighttime, put on daytime mode. You know, I just kind of adjust depending on what I'm watching and what time of the day I'm watching. So it's almost become second nature to me. If I think back to the old me, it was just like turn something on and watch it. Now it's more I kind of adjust based on my surroundings of what I'm doing. I stopped playing games for nine months because I had migraines for nine months stright wow, because my eyes were so bad. But I did it because I don't work, I'm disabled. It was I dealt with it and I had to stop, and that nine months was hard for me because it was something. I don't have hobbies because I can't do a lot and I was my hobby.
00:18:46
Speaker 1: But you were able to come back to it.
00:18:48
Speaker 2: I was able to come back to it because I personally, you know, I went online, Chad GBT, I did everything trying to figure out ways to just make sure that I could do more. You know that. I was like, there's got to be little things that I I could do to make myself be able to do this a little bit more. And it's working so far.
00:19:04
Speaker 1: And you found them.
00:19:05
Speaker 2: Yeah.
00:19:05
Speaker 1: You know, looking back, Jay, what do you wish you had known about advocating for yourself earlier in your journey?
00:19:12
Speaker 2: Being told that what you're feeling is not you know, the traditional symptoms, and I'm like, you know, I've been dealing with this for eight years now. You know, I've had doctors tell me you know more about your condition than I do.
00:19:24
Speaker 1: Wow.
00:19:24
Speaker 2: It's sad, but also empowering that I've learned so much over that timeframe.
00:19:30
Speaker 1: Jayshawn's experience is not uncommon, especially for people with more isolated symptoms like the ocular symptoms of MG. While frustrating, these experiences can also lead to powerful self advocacy. Jashn's story shows that you are the expert in your body, and you are the ultimate authority on what you are experiencing. Jay, what advice would you share with someone who feels like they're not being heard by their doctors.
00:19:57
Speaker 2: You can change who your doctor is. I think some people out there that feel like they're not being heard they think, well, I can't really get anywhere else or I can't really do anything else, so I kind of have to deal with this person and just kind of deal with it. No, there's virtual there's companies out there who do people who have an MG that can actually sit and talk to you with groups. There's people who have different doctors that can give you different information of what they went through and maybe you not even know that you're in the same area. You can have someone come to your house. You can do a lot of different things, and don't always think that you have to settle for that one person.
00:20:34
Speaker 1: Well, it may take time to find the best doctor for you. Once you have that person, they can be a powerful ally. For Jashan, that's his primary care provider.
00:20:43
Speaker 2: The one person that will never ever ever change in my life is my primary care provider because that person is your guide to everything. Without that primary care provider, I would not be able to get some of the tests that I've gotten done, some of the doctors I've gotten done, referrals, the referrals, things of that nature. Because I didn't think of this, and it was just like, how about we go this route? And you know, now it's like family, I've seen my PCP for almost eight years. He's like it's been a constant. Yeah, he's like a constant in my life. And I would go to bad for this guy and need to go to bad for me. Even the nurse that's with him has been in their whole time. It's like when I call and they're just like, man, I was thinking about you. I want you to be able to get through this. When I'm just like, it just feels good that. You know, when you have someone on your side, don't let them go. Whatever you have to do, you stick with that person. But I would say, just for someone going through that, just advocating, just remember that you don't have to stay with who you're with. There are other options out there for you.
00:21:41
Speaker 1: Wow, amazing, and especially like you said, with you know, changes in technology, with telehealth, you know, we have other options that we didn't have just a few years ago. Yes, Jay, you've talked about how technology at home has made life easier for you. What role have those tools played in helping you stay independent and to help keep you moving forward.
00:22:01
Speaker 2: So the most recent thing that I've gotten over the fear of people judging me is walking sticks, because I always get that whole get out of the handicapped parking. What are you doing in a handicap parking?
00:22:13
Speaker 1: Yeah you look perfectly fine.
00:22:14
Speaker 2: Yeah you look perfectly fine. But walking sticks have been a lifesaver. You know, I can move and if I feel like I'm losing my balance, I can just grab onto that walking stick. Having a walker next to my bed, even though I'm not using it around my house, just being able to get up from my bed to be able to just get to a standing position. Also my adjustable bed, depending on what I'm feeling in my arms, my legs, my back, my neck, whatever weakness I have, I'm able to adjust that bed to fit those knees. Because you can adjust based off of how you're feeling that day. You know, if you're feeling a little bit weaker, you can adjust your sleep setting. If you're feeling you know you have another health issue, a grabber, just you know, something a grab if I dropped my peel bottle on the floor. I could use that grab it because I'm not bending over exerting too much energy. I say, yeah, So there's a lot of little things out there with technology. My smart watch has definitely been helpful as well too. You know, I had a fall in the shower and the smart watch was able to ask you fail, you know, are you okay? And the watch is waterproof so you can wear it in the shower. Wow, you can do everything you need. You can actually make phone calls from them usually, So it's very nice to have that that smart watch available for you for sure.
00:23:33
Speaker 1: Wow, and you're already wearing it, it knows if you fell. That's pretty impressive. What did it feel like to eventually connect with other people who really understood what you were going through.
00:23:44
Speaker 2: I can't even really explain the feeling. It just felt great because, like I said, you know, I have my friends, I have my family, and no matter what, they'll never understand one hundred percent of what I'm going through because this is something that I don't wish up my worst enemy to have MG, especially in the early stages, and the fact that having someone who's gone through it, having someone who's active in maybe a myosthenic crisis to where you know, they were just on a ventilator or they just had issues swallowing or anything of that nature. And I've been in that position, and it's able to just hear their story and what they went through and how they got through it and came on the other side. It is just like it's not just me, you know, And I know, I think there's probably a million or less people in the US probably you know, that are going through what we're going through. And the fact that they are someone that I could just talk to and reach out to when I need to and we can kind of we can kind of vent and kind of talk about our struggles together has just been amazing.
00:24:45
Speaker 1: Well, I mean it sounds like Jay that these groups and these people have really built your confidence. Yeah, how has it changed the ways that you even manage your days?
00:24:54
Speaker 2: My days went from very not dark days, but they were more sleep how many hours, like I could count how many hours I was awake that day, And it went to, Okay, there's a meeting that I can come up to, I can talk to or you know, I have this very close friend of mine and she's you know, I always tell how she's she's just changed my life for the better, and she's you know, she listens to me, she talks to me, she doesn't sugarcoat anything, and she's just been amazing. My mom has done a lot for me. Those are you know, two of the people that have done so much for me, because a lot of people don't have anyone besides those groups. And you know, if I have two, three, four people in my life that understanding even though they aren't living it, it definitely helps kind of mitigate some of the issues that I do have. But it's a lot to get through the day to just kind of make sure that I am just making it through the day. People don't realize that even though I don't work, I have a twenty four to seven job. I have to try to get through the day because the motivation that I have now is definitely a lot more than it used to be because I will I'll be honest, there's days where I feel like it's a little much, you know now, But the fact that I didn't lose my spirit, you know, right, and I'm still here.
00:26:16
Speaker 1: You are, Jay, what gives you the most confidence as you keep moving forward.
00:26:22
Speaker 2: This has given me confidence talking with everyone and realizing how much of an impact that I have on people, and going through the meetings and people telling me you helped me so much and you've done you know, even though it might not you might not feel like you've helped me in ways to think of different things. Because I have that technology background. I work for Best Buy for five years, you know, so I know technology. I know you know, I work for AT and T, so I know ways that have helped people. And people have told me like, you've helped me more than you know, and I'm just like, well, thank you, you know. Or people reaching out like we should get dinner, we should do this, we should do that, and I'm like, I realized I had that big of an impact on you. I thought I was just being my goofy self, you know, and people love it. Yeah, people, you know, people love that goofy version of me and I it definitely has made me feel a lot better and it's definitely given me a second wind. It's just helped me in more ways than I can really say.
00:27:19
Speaker 1: Yeah, to just be seen for who you are.
00:27:21
Speaker 2: Just to be seen and because the person that I feel like is seen on the outside sometimes is just not what's really me. And you know, once you get to know me, I'm just this person that just wants to make people happy.
00:27:34
Speaker 1: It's amazing. Jay. Last question, what would you tell someone who's just at the beginning of their MG journey.
00:27:41
Speaker 2: It gets better. The support is there, the technology is there, the medicine is getting better and better. They're coming out with different options for you. Just don't give up. There's so many groups out there, just typing MG groups and you'll find so many people are literally there for you, just like you're their family, because we are a little family, because we're so small, and you're not alone. You're part of a family that you don't even know yet, but you are. You do have a small little family in us, and we can definitely be there for you, no't matter what.
00:28:16
Speaker 1: It's amazing. Thank you so much, Jay.
00:28:18
Speaker 2: Of course, thank you.
00:28:24
Speaker 1: For anyone listening who maybe at the beginning of their journey. I hope Jay Sean's story reminds you that you're not alone and finding the right community can make a powerful difference. That's what the seasons all about, bringing people together, sharing experiences and learning from one another. As we move forward until next time, take Care of Yourself. Untold Stories Life with a Severe autoimmune condition is produced by Ruby's Studio from iHeartMedia in partnership with Argenix and hosted by me Martine Hackett. Our executative producer is Yvonne Shehan. Our producer is Leah Sutherland. This episode was written and produced by Diana Davis. Post production for this season is by Tom Sullivan and Paul Videleins of Audiography
