00:00My intestine turned inside out.
00:02Doctors couldn't do anything about it and I almost died.
00:06I was very weak. I'd eaten for two weeks.
00:08I never really regained the strength in my muscles after that.
00:12My condition is known to cause a muscle wasting condition.
00:16Over time, you'll lose the ability to walk, talk, swallow, and then eventually breathe.
00:21I went to get tested and today I am sharing the results from that test with my best friend, Sammy.
00:27I'm scared of how she'll react. It could get emotional.
00:30So what did you find out in the appointment?
00:35My name is Mikey. I'm 25 years old. I'm an audio engineer, producer,
00:40and my condition is so rare that it doesn't even have a name.
00:44Doctors estimate that I am 1 in 17 million.
00:50It takes me a while buttoning up clothes.
00:52I just like have a hard time using both hands, but it's not impossible.
00:57Just a little harder.
00:58My condition affects my brain.
01:02Basically, it causes a lot of neurological problems such as seizures,
01:07balance problems, mood and memory problems, and muscular problems.
01:12Over the years, I have become weaker.
01:14Getting ready in the morning takes me a lot longer than it used to
01:18and I know that eventually I will lose my ability to walk.
01:21Knowing that eventually I will need help to do basic things is very
01:27hard to come to terms with because it's like you can't even really imagine it.
01:33In 2022, I noticed I was becoming a little bit more clumsy.
01:38I started tripping over the rugs. I wasn't able to really pick my foot up.
01:43After about a year, my muscles just got weaker.
01:45We came harder to walk. I started using a cane.
01:49I ended up going to a bunch of different specialists,
01:52lots of different types of doctors I've never even heard of before.
01:55I didn't even know those kinds of doctors existed.
01:58I finally ended up at a geneticist's office and they found out I have a genetic mutation.
02:04Only about 400 people in the world are known to have mutations in this gene,
02:08so not much is really known about it.
02:13This is a physical therapy exercise.
02:16This works out your brain and your body coordination, memory, muscles.
02:25Winter of 2022, I wasn't feeling well.
02:28I just had a lot of upper abdominal pain.
02:31It kind of just felt like somebody was twisting something inside.
02:36I ended up going to the hospital and they went in and did a CAT scan.
02:42The doctor comes running in and says,
02:45I've never seen this in an adult.
02:47You have something called an intussusception.
02:49Your intestines fold inside of itself, kind of like a sock.
02:52It was in a very dangerous spot.
02:54I was there for about two weeks.
02:56I wasn't able to eat or drink anything.
02:58They did all types of tests.
03:00Overall, I was just really scared because I wasn't sure what was happening.
03:03And to be quite honest, neither did the doctors at the hospital.
03:07What we know now is that it could be linked to my neuromuscular problems.
03:13After the hospital, I was very weak.
03:15I hadn't eaten for two weeks.
03:16That's kind of where the turning point was.
03:19I never really regained to strengthen my muscles after that.
03:24It's definitely hard to stay positive.
03:26It's always a challenge.
03:27But I think remaining grateful for what you can still do,
03:31what you still have, helps a lot.
03:34Seeing how my condition has progressed over time,
03:38of course, it's sad and I worry a lot.
03:41But I definitely think I've still come a long way.
03:45If you would have asked me four years ago before all this started,
03:48if I could go through something like this, I would have said no.
03:50I realize I'm a lot stronger than I think.
03:53Hey.
03:55How are you?
03:57My best friend, Sammy, is coming over.
03:59And we're going to talk about my appointment yesterday.
04:02My neurologist that I normally work with started to suspect
04:07something was going on with my muscles.
04:10I'm heading to the ALS clinic for my EMG and to meet with the ALS specialist.
04:16I haven't really slept a lot in the last week and a half, to be honest.
04:21I've been really anxious regarding this appointment.
04:25My condition is known to cause something called ALS,
04:28which stands for amyotrophic lateral sclerosis.
04:32It's a 100% fatal neurodegenerative disease
04:36that affects the motor neurons in your brain and spinal cord.
04:41Eventually, over time, you will lose the ability to
04:44walk, talk, swallow, and then eventually breathe.
04:48I was very nervous going into the appointment yesterday.
04:51I think the fear of that even being a possibility is extremely overwhelming.
04:57But if it's a possibility, I need to explore that.
05:01How did the appointment go? How did it start?
05:03Yes. So I've been anxious to tell you about it.
05:06So I had something called the EMG and a nerve conduction study.
05:10So basically, it just checks how well your nerves are working.
05:16They have this needle that is hooked up to this wire,
05:21and they send electrical impulses into it.
05:23They stick it in your muscles,
05:25see how well your muscles and nerves are communicating with each other.
05:28It was really painful.
05:30I did not have a great time, but I got through it.
05:33So what did you find out in the appointment?
05:35I'm very nervous to tell Sammy my results.
05:39I know that she'll understand and she will help me get through this.
05:45But I am nervous telling her I'm scared of how she'll react.
05:49My results showed that I do have some motor neuron problems in my spinal muscles.
05:59So it's not great news.
06:01Of course, they were thinking it's more ALS type,
06:04but I still have hope that maybe it could be something else that's maybe not as severe,
06:11serious, but I think just the fact that it's a possibility is freaky.
06:16Yeah.
06:16It's really scary.
06:17At least you have a piece of the puzzle.
06:20Yes, it is a huge piece of the puzzle.
06:22To start knowing how to properly navigate everything,
06:25rather than just living in this limbo state,
06:28or just kind of thinking it's this or thinking it's that.
06:31Trying to find the silver lining, you know, in the situation.
06:35I know that it's hard being a young person navigating a chronic illness,
06:39but you're doing a great job.
06:41You are doing a great job.
06:43I love you so much.
06:48I see the comments that come through.
06:50I see on your TikToks people being like,
06:52Mikey, or like, you know, you still bringing light even through all this crazy stuff.
06:59Yeah, that's my goal.
07:00I think that there's always light at the end of the tunnel.
07:04Hi, my name is Mikey and I am an interception survivor.
07:09I originally went to social media specifically after my interception
07:14because I just wanted answers.
07:16So I made a video and I just posted it basically just asking like,
07:19hey, has this happened to anybody else?
07:21Eventually, one person commented and I was like, yes, like I just had this.
07:24And then another person commented and it eventually ended up blowing up.
07:29I realized I'm not the only one going through this
07:31and connecting with other people and talking about what I was going through online
07:36made me feel less alone.
07:38And it ended up going from me asking for help,
07:42me asking for help to me helping others.
07:46Okay, ready?
07:48Hey, besties.
07:49I'm here with my friend, Sammy.
07:51Hi.
07:52Today, I want to talk to you guys about the importance of having a support system,
07:57especially when living with a chronic illness or a rare disease.
08:00It's important to keep the message of hope alive,
08:04especially for people going through these really hard times
08:08and difficult circumstances in general.
08:11So I have gotten a lot of, you know, not so nice comments on my videos,
08:16which is the hard part about being so vulnerable and open online.
08:19What's wrong with his speech?
08:21You keep twitching your face.
08:23It's annoying AF.
08:25Did he also have a stroke or something?
08:27Does it feel like just so bonkers or does it hit a nerve?
08:32Sometimes like the really mean ones kind of stick with me.
08:36Like I'd be lying if I said like they don't bother me like at all,
08:38but they do because it's like those people are saying that about me.
08:41So it's hard.
08:43Despite all of the negative comments, I have gotten a lot of positive comments.
08:47These past couple of years, I've been dealing with seizures from a neurodisorder.
08:51So I understand in some aspect, you matter and everything will be okay.
08:55That's what it's all for.
08:57Exactly.
08:58This is why I do what I do because I know that somewhere out there,
09:02it's making a difference in somebody's life.
09:04The thing that keeps me positive now is just the little spaces in between,
09:12hanging out with my friends, doing music, making these videos online,
09:18talking to people, raising awareness.
09:21I see the beauty in the small things now that I think I took for granted before.
09:26Every moment is kind of precious to me now.
09:29It's been a huge challenge, but it's also taught me a lot about myself,
09:34how strong I am and how much a person can endure and still keep going.
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