~Raine
Registered User
Making a new thread just because I'm concerned about a new set of things now. Tried to be as clear as possible. If needed please look back at my previous posts for more symptoms info, I'll try to add more as I think of it.
A summary of what I know I have and tests I've had done:
I feel like I most definitely have developed anhedonia and lack of empathy within the course of a month and it's scaring the life out of me. I can still feel some emotion, but I haven't felt truly excited or happy since this got worse. If I laugh it feels forced or very short lived. Series or activities I have a strong attachment to feel distant all of a sudden.
I've been having issues since 2021 with concentration, finishing tasks, motivation, forgetting to eat or take showers, and my friends noticed it. They thought it was ADHD, so I was tested for ADHD a few months ago by one primary, then my main primary tested me again on the 22nd, both were positive for ADHD.
I figured it was a combination of ADHD, derealization from being inside so much and not getting out hardly at all since the pandemic started, depression, OCD, and PTSD.
Honestly, I was concerned about some kind of dementia back in 2021 as well because I had started getting bouts of deja vu, disorientation, and trouble thinking out of nowhere, and it hasn't stopped since then. I'm still having deja vu even now, and I read that it can be a warning sign of dementia, so that's the whole reason I went to get it checked out. My neuro thought it was sleep deprivation, and ordered me a sleep study, as well as an MRI. MRI was clean compared to one I had in 2019. I was positive for moderate sleep apnea. She suggested an EEG just in case of the off chance it was seizures, but I only just recently scheduled it when this started worsening, now it's setup for July. My friends tried reassuring me that it was normal, that some of them had deja vu constantly when in an unhealthy/stressful environment, so I tried to brush it off, thinking yeah, I'm way to young for this and it's my health anxiety driving me up a wall again.
I recently found out my uncle on my mom's side has Frontotemporal Dementia(supposedly?), and he JUST turned 65 after his diagnosis a week later, my mom didn't give me details, just told me that he went to the neuro and "just by talking to him" they knew he had it. Didn't specify what kind. She told me he was prescribed a medication that was supposed to "help his memory", so I'm confused? Because as far as I know there's no medication that helps memory but there's stuff for behavioral symptoms. Unless it was just something for anxiety or behavioral issues, I don't know if he actually has an official diagnosis.
I haven't visited him irl in about a year I think, but my mom told me he was repeating telling them about his vegetable garden once or twice a few minutes apart.
I'm scared that's what I've developed since it can effect younger people. I've noticed my mom has been forgetful sometimes or repeats something right after she says it. Her mental health probably isn't the best either and she's a narcissist on top of that, so I can't rely on her at all. And my father doesn't believe I'm having trouble either. I worry she might have some kind of early onset dementia. My great grandmother and grandmother both on her side had some kind of dementia. As far as I know my grandmother had vascular and my great grandmother had alzheimers, I believe they were both mid 60's or older. I was a little kid at the time so I don't remember specifics, but I do remember my mom trying to care for her and them having a yelling match because she didn't know who my mom was, and I hardly remember visiting her in a nursing home.
I'm so lost and isolated and scared. I had so many plans for the future..I've been so dependent on my overbearing parents my whole life and just started to grow and become more independent.
I'm still waiting on a neuropsychology referral to go through, I asked my primary if she could change it to a closer place that also does telehealth appointments, which is awesome because it's almost a two hour drive and my parents won't take me, I'll have to get an Uber or Lyft. My appointment with the neuro who's going to be taking over for my previously mentioned one isn't until early June. About all I can do right now besides asking my new neuro for a scan when I see her next month.
I don't know.
I've been trying to find things to reassure or prove me wrong but I feel like I sound like all of these markers for FTD, and I don't know if my mom has the gene. She's 67 years old, so not young onset I suppose if she's developing it.
I really want to believe I'm not a 26 year old inflicted with this awful disease but it feels like everything is making sense and it's scaring me.
I was thinking of asking for genetic testing, should I if my insurance will pay for it? I'm not sure what else I can do while I wait for a neuropsych eval because I feel like my insurance would refuse a SPECT scan this soon in the process.
A summary of what I know I have and tests I've had done:
- Nerve conduction study(2019 or 2020, not listed on my patient portal)
- CT head without contrast (4/8/2019, 7/15/2021)
- MRI brain with and without contrast (3/16/2020, 8/5/2021)
- Sleep Study (12/12/2022 & 4/20/2023, positive for moderate sleep apnea)
- B12 tested (4/22/2024, low side of normal, taking B12 500mcg for the past 3-4 weeks)
- Full bloodwork done (4/22/2024, all normal)
- MMSE scored 30/30, Minicog scored 4/5, couldn't recall third word, I remember looking it up recently and I had remembered captain and garden, but not picture. Done by my primary/family medicine doctor, not a neuro.
- Tested positive for ADHD, I've tried Adderall, Concerta ER, and now switched to Focalin ER because of these cognitive issues. It doesn't seem to help much except for keep me awake and a little more coherent for a few hours.
- I've exhibited OCD symptoms like touching things, intrusive thoughts, impulsiveness, and paranoia since 2018 or 2019.
- I used to eat alot of sugar to the point of giving myself headaches, in the past 5-6 years I've done it significantly less but I'm worried I've done damage. I also had migraines as a child but part of that was sensitivity to noise/light or again overindulging.
- I had a minor concussion back in either 2017 or 2018 from falling off my horse, I remember quite a bit of it despite it being blurry.
- I've developed tinnitus within the past few years, and I'm pretty sure I have hearing loss. I keep getting thrumming in my ears at least once or twice a week, or have a piercing noise for a few moments.
- Vision has worsened in the past 3-4 years, I see halos on everything. I've had an eye pressure feeling in my right eye for about 2 years.
- Things feel unfamiliar but not unrecognizable, this has worsened the past month
- Feeling more impulsive, less empathetic, less caring, and like my inhibitions are slipping. I realize I'm speaking too loud, I keep having issues word finding and stringing together my sentences more often. I realize I'm doing these things but sometimes it takes me a moment then dread sets in.
- I'm feeling much more impatient. I can hardly focus on anything, I can't multitask anymore, or it takes a long time. I just end up ditching what I'm doing because I either forget or lose interest.
- I can still bathe and feed myself, but I have a hard time remembering when I've showered and I haven't been eating until I get hunger pains or when I have to take my meds and vitamins in the morning.
- I'm also struggling to focus on eating, but I do finish my food most of the time. I've found myself intensely focusing on eating what's in front of me and making sure I don't get distracted by anything else.
- I've had issues with fatigue for years, and I'm not sure how much of it would be the sleep apnea at this point, but I've been constantly tired, getting overstimulated easily, and having to force myself to stay up during the day. I'm taking melatonin now and it's helping me feel slightly more rested for now. I also have my floor fan blowing on me to give me more air and I use a breathing strip. I don't have a CPAP yet, in the process of getting one if the insurance will allow me another one. They confiscated my first one for not using it enough when I had the wrong mask.
I feel like I most definitely have developed anhedonia and lack of empathy within the course of a month and it's scaring the life out of me. I can still feel some emotion, but I haven't felt truly excited or happy since this got worse. If I laugh it feels forced or very short lived. Series or activities I have a strong attachment to feel distant all of a sudden.
I've been having issues since 2021 with concentration, finishing tasks, motivation, forgetting to eat or take showers, and my friends noticed it. They thought it was ADHD, so I was tested for ADHD a few months ago by one primary, then my main primary tested me again on the 22nd, both were positive for ADHD.
I figured it was a combination of ADHD, derealization from being inside so much and not getting out hardly at all since the pandemic started, depression, OCD, and PTSD.
Honestly, I was concerned about some kind of dementia back in 2021 as well because I had started getting bouts of deja vu, disorientation, and trouble thinking out of nowhere, and it hasn't stopped since then. I'm still having deja vu even now, and I read that it can be a warning sign of dementia, so that's the whole reason I went to get it checked out. My neuro thought it was sleep deprivation, and ordered me a sleep study, as well as an MRI. MRI was clean compared to one I had in 2019. I was positive for moderate sleep apnea. She suggested an EEG just in case of the off chance it was seizures, but I only just recently scheduled it when this started worsening, now it's setup for July. My friends tried reassuring me that it was normal, that some of them had deja vu constantly when in an unhealthy/stressful environment, so I tried to brush it off, thinking yeah, I'm way to young for this and it's my health anxiety driving me up a wall again.
I recently found out my uncle on my mom's side has Frontotemporal Dementia(supposedly?), and he JUST turned 65 after his diagnosis a week later, my mom didn't give me details, just told me that he went to the neuro and "just by talking to him" they knew he had it. Didn't specify what kind. She told me he was prescribed a medication that was supposed to "help his memory", so I'm confused? Because as far as I know there's no medication that helps memory but there's stuff for behavioral symptoms. Unless it was just something for anxiety or behavioral issues, I don't know if he actually has an official diagnosis.
I haven't visited him irl in about a year I think, but my mom told me he was repeating telling them about his vegetable garden once or twice a few minutes apart.
I'm scared that's what I've developed since it can effect younger people. I've noticed my mom has been forgetful sometimes or repeats something right after she says it. Her mental health probably isn't the best either and she's a narcissist on top of that, so I can't rely on her at all. And my father doesn't believe I'm having trouble either. I worry she might have some kind of early onset dementia. My great grandmother and grandmother both on her side had some kind of dementia. As far as I know my grandmother had vascular and my great grandmother had alzheimers, I believe they were both mid 60's or older. I was a little kid at the time so I don't remember specifics, but I do remember my mom trying to care for her and them having a yelling match because she didn't know who my mom was, and I hardly remember visiting her in a nursing home.
I'm so lost and isolated and scared. I had so many plans for the future..I've been so dependent on my overbearing parents my whole life and just started to grow and become more independent.
I'm still waiting on a neuropsychology referral to go through, I asked my primary if she could change it to a closer place that also does telehealth appointments, which is awesome because it's almost a two hour drive and my parents won't take me, I'll have to get an Uber or Lyft. My appointment with the neuro who's going to be taking over for my previously mentioned one isn't until early June. About all I can do right now besides asking my new neuro for a scan when I see her next month.
I don't know.
I've been trying to find things to reassure or prove me wrong but I feel like I sound like all of these markers for FTD, and I don't know if my mom has the gene. She's 67 years old, so not young onset I suppose if she's developing it.
I really want to believe I'm not a 26 year old inflicted with this awful disease but it feels like everything is making sense and it's scaring me.
I was thinking of asking for genetic testing, should I if my insurance will pay for it? I'm not sure what else I can do while I wait for a neuropsych eval because I feel like my insurance would refuse a SPECT scan this soon in the process.
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