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My intestine turned inside out
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Doctors couldn't do anything about it, and I almost died. I was very weak. I hadn't eaten for two weeks
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I never really regained the strength in my muscles after that. My condition is known to cause a muscle-wasting condition
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Over time, you'll lose the ability to walk, talk, swallow, and then eventually breathe
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I went to get tested, and today I am sharing the results from that test with my best friend, Sammy
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I'm scared of how she'll react. It could get emotional. So what did you find out in the appointment
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My name is Mikey. I'm 25 years old. I'm an audio engineer, producer, and my condition is so rare that it doesn't even have a name
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Doctors estimate that I am one in 17 million. It takes me a while, buttoning up clothes
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I just have a hard time using both hands, but it's not possible, just a little harder
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My condition affects my brain. Basically, it causes a lot of neurological problems
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such as seizures, balance problems, mood and memory problems, and muscular problems
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Over the years, I have become weaker. Getting ready in the morning takes me a lot longer than
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it used to, and I know that eventually I will lose my ability to walk
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Knowing that eventually I will need help to do basic things is very hard to come to terms with
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because it's like you can't even really imagine it. In 2022, I noticed I was becoming a little bit more clumsy
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I just started tripping over like the rugs. I wasn't able to really pick my foot up
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After about a year, my muscles just got weaker. We became harder to walk, started using a cane
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I ended up going to a bunch of different specialists, lots of different types of doctors I've never even heard of before
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I didn't even know those kinds of doctors existed. I finally ended up at a geneticist's office and they found out I have a genetic mutation
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Only about 400 people in the world are known to have mutations in this gene
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So not much is really known about it. This is a physical therapy exercise
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This works out your brain and your body coordination memory muscles Winter of 2022 I wasn feeling well I just had a lot of upper abdominal pain It kind of just felt like somebody was twisting something inside I ended up going to the hospital and they
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went in and did a CAT scan. The doctor comes running in and says, I've never seen this in
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an adult. You have something called an intusception. Your intestines fold inside of itself, kind of
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like a sock. It was in a very dangerous spot. I was there for about two weeks. I wasn't able to
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eat or drink anything. They did all types of tests. Overall, I was just really scared because
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I wasn't sure what was happening. And to be quite honest, neither did the doctors or the hospital
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What we know now is that it could be linked to my neuromuscular problems. After the hospital
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I was very weak. I hadn't eaten for two weeks. That's kind of where the turning point was
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I never really regained the strength in my muscles after that. It's definitely hard to stay positive
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It's always a challenge. But I think remaining grateful for what you can still do and what you still have helps a lot
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Seeing how my condition has progressed over time, of course, it's sad and I worry a lot
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But I definitely think I've still come a long way. If you would have asked me four years ago before all this started
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if I could go through something like this, I would have said no. I realize I'm a lot stronger than I think
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Hey. Hi, baby. How are you? My best friend Sammy's coming over
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and we're going to talk about my appointment yesterday. My neurologist that I normally work with
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started to suspect something was going on with my muscles. I'm heading to the ALS clinic for my EMG
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and to meet with the ALS specialist. I haven't really slept a lot in the last week and a half, to be honest
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I've been really anxious regarding this appointment. My condition is known to cause something called ALS
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which stands for amyotrophic lateral sclerosis. It's a 100% fatal neurodegenerative disease
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that affects the motor neurons in your brain and spinal cord. Eventually over time, you'll lose the ability to walk, talk, swallow, and then eventually breathe
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I was very nervous going into the appointment yesterday. I think the fear of that even being a possibility is extremely overwhelming But if it a possibility I need to explore that How did the appointment go
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Like, how did it start? Yes. So I've been anxious to tell you about it
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So I had something called the EMG and a nerve conduction study
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So basically, it just checks like how well your nerves are working
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They have this like needle that is hooked up to this wire
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and they send electrical impulses into it. They stick it in your muscles
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see how well your muscles and nerves are communicating with each other. It was really painful
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I did not have a great time, but I got through it
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So what did you find out in the appointment? I'm very nervous to tell Sammy my results
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I know that she'll understand and she will help me get through this
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but I am nervous telling her I'm scared of how she'll react. My results showed that I do have some motor neuron problems in my spinal muscles
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So it's not great news. You know, of course, they were thinking it's more ALS type
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But, you know, I still have hope that maybe it could be something else that's maybe not as severe or serious, you know
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But I think just the fact that it's a possibility is freaky. It's really scary
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At least you have a piece of the puzzle. Yes, it is a huge piece of the puzzle
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To start knowing how to properly navigate everything, rather than just living in this limbo state
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or just kind of thinking it's this or thinking it's that. Trying to find the silver lining, you know, in the situation
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I know that it's hard being a young person navigating a chronic illness
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but you're doing a great job. You are doing a great job
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I love you so much. I see the comments that come through
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I see on your TikToks people being like, Mikey, or like, you know, you bring, you're still bringing light even through all this crazy stuff
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Yeah. That's my goal. I think that there's always light at the end of the tunnel
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Hi, my name is Mikey and I am an intussusception survivor. I originally went to social media specifically after my intussusception because I just wanted answers
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So I made a video and I just posted it basically just asking like hey has this happened to anybody else Eventually one person commented and I was like yes like I just had this And then another person commented and it eventually ended up blowing up
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I realized I'm not the only one going through this. And connecting with other people and talking about what I was going through online made me feel less alone
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And it ended up going from me asking for help to me helping others
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Okay, ready? Hey besties. I'm here with my friend Sammy. Hi. Today I want to talk to you guys about the importance of having a support system
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especially when living with a chronic illness or a rare disease. It's important to keep the message of hope alive
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especially for people going through these really hard times and difficult circumstances in general
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So I have gotten a lot of, you know, not so nice comments on my videos
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which is the hard part about being so vulnerable and open online. What's wrong with his speech
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You keep twitching your face. It's annoying AF. Did he also have a stroke or something
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Does it feel like just so bonkers or does it hit a nerve
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Sometimes like the really mean ones kind of stick with me. Like I'd be lying if I said like they don't bother me like at all
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but they do because it's like those people are saying that about me. So it's hard
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Despite all of the negative comments, I have gotten a lot of positive comments
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These past couple of years, I've been dealing with seizures from a neurodisorder. So I understand in some aspect, you matter and everything will be okay
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That's what it's all for. Exactly. This is why I do what I do. Because I know that somewhere out there, it's making a difference in somebody's life
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The thing that keeps me positive now is just the little spaces in between
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hanging out with my friends, doing music, making these videos online, talking to people
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raising awareness. I see the beauty in the small things now that I think I took for granted before
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Every moment is kind of precious to me now. It's been a huge challenge, but it's also taught me a
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lot about myself, how strong I am and how much a person can endure and still keep going
