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25-YEAR-OLD Producer and Audio Engineer Mikey has a neurological condition so rare that it doesn't have a name - when doctors discovered his genetic mutation, they predicted that he is "one in 17 million". The condition means Mikey lives with "seizures, balance problems, mood and memory problems, and muscular problems" and something as simple as getting up in the morning takes him two hours on average. Having experienced seizures from childhood, the other symptoms developed more recently - in 2022, he noticed he was becoming "more clumsy" and "tripping over rugs"... A year later, he was using a cane to walk. During that time, Mikey received another huge blow to his health when he took himself to the Emergency Room with extreme abdominal pain. After a CAT scan, a doctor told Mikey that he had something they had "never seen in an adult" - a rare condition called an 'intussusception', where the intestine is "folded inside of itself, kind of like a sock." Doctors had no answers for the condition and had to wait for it to resolve itself. Thankfully it did, but Mikey had not been able to eat or drink for weeks and had lost huge amounts of strength as a result. Daily therapies have not been enough for Mikey to regain that strength and recently his doctor was concerned that "something was going on" with his muscles. Mikey's condition is known to be associated with ALS - a "100% fatal" condition which, if he were to be diagnosed, would gradually mean he would "lose the ability to walk, talk, swallow and then eventually breathe." Yesterday Mikey went for testing to find out if he has ALS and today his best friend Sami is coming over to hear the results. With such an "overwhelming" crossroads ahead for Mikey, how will Sami react to his potentially life-changing news?
Credits:
Videographer: Bradley Beesley
Series Producer: Kim Nguyen
Video Producer: Tom Buckman
Editor: Vanessa Nascimento
Follow Mikey:
https://www.tiktok.com/@mikeys_journey
https://www.instagram.com/rarewithmikey
25-YEAR-OLD Producer and Audio Engineer Mikey has a neurological condition so rare that it doesn't have a name - when doctors discovered his genetic mutation, they predicted that he is "one in 17 million". The condition means Mikey lives with "seizures, balance problems, mood and memory problems, and muscular problems" and something as simple as getting up in the morning takes him two hours on average. Having experienced seizures from childhood, the other symptoms developed more recently - in 2022, he noticed he was becoming "more clumsy" and "tripping over rugs"... A year later, he was using a cane to walk. During that time, Mikey received another huge blow to his health when he took himself to the Emergency Room with extreme abdominal pain. After a CAT scan, a doctor told Mikey that he had something they had "never seen in an adult" - a rare condition called an 'intussusception', where the intestine is "folded inside of itself, kind of like a sock." Doctors had no answers for the condition and had to wait for it to resolve itself. Thankfully it did, but Mikey had not been able to eat or drink for weeks and had lost huge amounts of strength as a result. Daily therapies have not been enough for Mikey to regain that strength and recently his doctor was concerned that "something was going on" with his muscles. Mikey's condition is known to be associated with ALS - a "100% fatal" condition which, if he were to be diagnosed, would gradually mean he would "lose the ability to walk, talk, swallow and then eventually breathe." Yesterday Mikey went for testing to find out if he has ALS and today his best friend Sami is coming over to hear the results. With such an "overwhelming" crossroads ahead for Mikey, how will Sami react to his potentially life-changing news?
Credits:
Videographer: Bradley Beesley
Series Producer: Kim Nguyen
Video Producer: Tom Buckman
Editor: Vanessa Nascimento
Follow Mikey:
https://www.tiktok.com/@mikeys_journey
https://www.instagram.com/rarewithmikey
Category
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NewsTranscript
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.