26 yrs old. Worried about FTD because of maternal uncle and symptoms.

[~Raine]

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:

• 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.

It seems like my head pressure has spread and gotten worse, and I'm having a harder time with word finding and holding or remembering conversations. It's getting harder for me to recall things I've done earlier in the day, or the day before. I can remember some things, like going to my doctor appointment on the 22nd last month, that I've been taking certain vitamins for the past few weeks, some videos I've watched, and some conversations. But other times I just don't remember at all. I'm usually pretty good with those types of things.

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.

 

[Collywobbles]

One of the key indicators of dementia is a partial or total lack of awareness of both symptoms and their underlying cause. You seem to be hyper-aware and able to sustain a continued understanding of them.

Also, your recall of symptoms, tests and treatments is absolutely excellent. This is another aspect of your condition which mitigates against it being dementia-related.

Your symptoms do sound overwhelming and it’s not surprising that you’re so worried. I hope you find a way forward with the medical folks who are looking out for you next.

 

[maggie6445]

Hello @~Raine, I'm sorry you are feeling so anxious at the moment .
You have had a lot of tests and you seem to be finding it difficult to accept the results.

Firstly I need to say I'm not a doctor nor do I have any medical background

You've said in previous posts that you have been diagnosed with ADHD and OCD.

"Illness anxiety" might be caused by your diagnosed conditions and can make you feel unwell. Have you asked if your health anxieties are linked with your ADHD? As I've said I'm not a medic so I don't know, just a thought.

In the meantime ,try not to Google your symptoms. It's adding to your anxiety at the moment . I know that's difficult sometimes, I've Dr Googled myself in the past and scared myself needlessly.

I really hope your Dr can help you to feel better.

 

[Violet Jane]

I'm not dismissing your concerns but try and hold on to the fact that your relatives who developed dementia were 40 years older than you are now. Dementia is vanishingly rare in someone your age. I'm not a medic but I think that a combination of anxiety, ADHD, OCD, sleep apnoea and, possibly, a bad diet is probably causing your symptoms. I think that you should take advice from the doctor about whether further testing is productive after the tests that you are currently having.

Whilst you are waiting for futher tests I think that the best thing that you can do is look after your health by eating healthily (not too much sugar, which can cause slumps after an initial pick-me-up), getting into a good bedtime routine which might help with insomnia (try not to nap during the day), getting outside for a walk each day and seeing your friends. Don't keep googling your symptoms. We can all fit ourselves into lists of symptoms but, generally, we don't have the illness.

I wouldn't worry about eating too much sugar having caused you long-term cognitive problems. Young people often have bad habits but they are resilient health-wise.

 

[~Raine]

One of the key indicators of dementia is a partial or total lack of awareness of both symptoms and their underlying cause. You seem to be hyper-aware and able to sustain a continued understanding of them.

Also, your recall of symptoms, tests and treatments is absolutely excellent. This is another aspect of your condition which mitigates against it being dementia-related.

Your symptoms do sound overwhelming and it’s not surprising that you’re so worried. I hope you find a way forward with the medical folks who are looking out for you next.

Some of what I had listed I posted on Reddit 3 days ago and the tests list from a month ago(had to check how long ago those were), I could probably remember the years and some months for some of the procedures if I didn't check, but I edited both of those posts a bit and added in everything else, so I suppose that's still good!

Thank you, I hope so too. It's torture having to wait on everything.

(What I copied from Reddit is below for reference)

[It seems like my head pressure is getting worse now and I'm having a harder time with word finding and holding conversations. I'm usually pretty good with those types of things. I feel like I'm becoming apathetic and it's scaring the life out of me. I want to enjoy things again but I feel like my life is over, like there's no point. I've been having an existential crisis and fearing losing my independance, especially when I'm only 26.

My uncle on my mom's side has Frontotemporal Dementia and I'm scared that's what I've developed since it can effect younger people. My mom acts odd sometimes and I worry she might have some kind as well. My great grandmother and grandmother both had some kind of dementia, as far as I know my grandmother had vascular and my great grandmother had alzheimers.

I'm so lost and isolated and scared. I had so many plans for the future..I've been so dependant on my narcissistic mother my whole life and just started to grow and become more independant.

I'm still waiting on a neuropsychology referral to go through. About all I can do right now besides asking my new neuro for a scan when I see her next month.

I had clean bloodwork except for my vitamin B12 being on the low end of normal, as well. Just, sitting here dreading the worst.

Nerve conduction study(2019 or 2020, not listed on my patient portal)

CT head wo contrast (4/8/2019, 7/15/2021)

MRI brain with and without contrast (3/16/2020, 8/5/2021)

B12 tested, normal (7/22/2021)

Sleep Study (12/12/2022 & 4/20/2023)]

 

[~Raine]

I'm not dismissing your concerns but try and hold on to the fact that your relatives who developed dementia were 40 years older than you are now. Dementia is vanishingly rare in someone your age. I'm not a medic but I think that a combination of anxiety, ADHD, OCD, sleep apnoea and, possibly, a bad diet is probably causing your symptoms. I think that you should take advice from the doctor about whether further testing is productive after the tests that you are currently having.

Whilst you are waiting for futher tests I think that the best thing that you can do is look after your health by eating healthily (not too much sugar, which can cause slumps after an initial pick-me-up), getting into a good bedtime routine which might help with insomnia (try not to nap during the day), getting outside for a walk each day and seeing your friends. Don't keep googling your symptoms. We can all fit ourselves into lists of symptoms but, generally, we don't have the illness.

I wouldn't worry about eating too much sugar having caused you long-term cognitive problems. Young people often have bad habits but they are resilient health-wise.

It's alright, I don't think you're dismissing me! I appreciate the reassurance and facts. Honestly the fact that they did develop it later on is what's keeping me somewhat sane despite all these problems, I'm hoping it's just everything lumped together causing issues as well and that I'm looking too much into it.

It drives me nuts that I'm so hyperfixated on checking my interactions with people. I noticed just trying to have a simple conversation with my mom earlier today completely drained all of my energy for the rest of the day because I was trying to word things correctly, making sure I wasn't repeating myself, etc. I've been having fatigue for months interacting with people but not to that big of an extent, so that doesn't help my anxiety at all.

 

[~Raine]

Hello @~Raine, I'm sorry you are feeling so anxious at the moment .
You have had a lot of tests and you seem to be finding it difficult to accept the results.

Firstly I need to say I'm not a doctor nor do I have any medical background

You've said in previous posts that you have been diagnosed with ADHD and OCD.

"Illness anxiety" might be caused by your diagnosed conditions and can make you feel unwell. Have you asked if your health anxieties are linked with your ADHD? As I've said I'm not a medic so I don't know, just a thought.

In the meantime ,try not to Google your symptoms. It's adding to your anxiety at the moment . I know that's difficult sometimes, I've Dr Googled myself in the past and scared myself needlessly.

I really hope your Dr can help you to feel better.

I definitely have health anxiety, I figure that's from the OCD and ADHD in terms of the obsessive thoughts and hyperfixating on my symptoms. I never was officially diagnosed with OCD by a psychiatrist but I could tell just from the "ritual" behaviors and unwanted disturbing intrusive thoughts that drove me to get medicated for it. Unfortunately, the medications I tried just made me feel numb.

Thank you, I hope so too. I'll do my best to stay off Dr. Google too.

 

[maggie6445]

Hello Raine,, As you have said you definitely have health anxiety I have copied a link to a UK Health service site for health anxiety that you may find useful..

Health anxiety

Health anxiety is when worrying about your health starts to take over your life. Read NHS advice about symptoms and and what to do if you have it.

www.nhs.uk

I hope you will find something helpful that you can try and that Drs can help you . Please ,stop googling those symptoms 🙂

 

[Jessbow]

I wonder if you could get help for your health anxiety- try and reduce the worrying which might eleviate some of the symptom

 

[Spottydog]

I have health anxiety. Unfortunately seeking reassurance does not help long term... It helps for a bit and then you move back to needing reassurance again or you find a new thing to worry about so you end up in a vicious circle. This anxiety is detrimental to your health. A way round it is to 'take action' with any concern you develop. Avoid endless googling of symptoms as you are looking for facts to back up your health worry. Instead, 'take action' and schedule an appointment with your doctor. Best wishes.

 

[David Joseph]

Hello Raine,
This is clearly a psychological problem, partly a habit that is as you say composed of seeking information and acting by going to see a doctor. If you have done this many times or your concerns are severe and repetitive, you should ask your GP for a referral to your local Clinical Pychology Department. Clinical Psychology/cognitive behaviour therapy was my career until I retired.
Best wishes
David Joseph

 

[~Raine]

I have health anxiety. Unfortunately seeking reassurance does not help long term... It helps for a bit and then you move back to needing reassurance again or you find a new thing to worry about so you end up in a vicious circle. This anxiety is detrimental to your health. A way round it is to 'take action' with any concern you develop. Avoid endless googling of symptoms as you are looking for facts to back up your health worry. Instead, 'take action' and schedule an appointment with your doctor. Best wishes

Hopefully I'll be wrong about my fears this time, it's killing me having to wait for answers. I've forced myself to stop googling symptoms for now as it's just been giving me a stress headache and existential dread thinking about FTD. Constant and spreading head pressure isn't helping the anxiety at all.

Thankfully I have the neuro appointment coming up in two weeks and I'm going to express my concerns and shoot for a MRI or SPECT scan or genetic testing. Thank you for the kind words.

 

[~Raine]

I wonder if you could get help for your health anxiety- try and reduce the worrying which might eleviate some of the symptom

Hello Raine,
This is clearly a psychological problem, partly a habit that is as you say composed of seeking information and acting by going to see a doctor. If you have done this many times or your concerns are severe and repetitive, you should ask your GP for a referral to your local Clinical Pychology Department. Clinical Psychology/cognitive behaviour therapy was my career until I retired.
Best wishes
David Joseph

Hello Raine,, As you have said you definitely have health anxiety I have copied a link to a UK Health service site for health anxiety that you may find useful..

Health anxiety

Health anxiety is when worrying about your health starts to take over your life. Read NHS advice about symptoms and and what to do if you have it.

www.nhs.uk

I hope you will find something helpful that you can try and that Drs can help you . Please ,stop googling those symptoms 🙂

Thank y'all for the advice and help. <3

I do plan on getting a psychiatrist and psychologist soon. Just a financial issue at the moment. My primary doctor did tell me that she suggests I work in tandem with a psychiatrist and neuropsychologist, so working towards those and a regular psychologist.

 

[canary]

Hello Raine, I haven't replied to your threads, but I have been reading them.

Honestly, hun, your symptoms do not sound like FTD. Also, although people develop FTD generally earlier than other types of dementia it usually starts in your 50s or 60s. Occasionally it starts in your 40s, but I have never heard of anyone developing it at your age.

I hope you get your appointments soon
xx

 

[~Raine]

Hello Raine, I haven't replied to your threads, but I have been reading them.

Honestly, hun, your symptoms do not sound like FTD. Also, although people develop FTD generally earlier than other types of dementia it usually starts in your 50s or 60s. Occasionally it starts in your 40s, but I have never heard of anyone developing it at your age.

I hope you get your appointments soon
xx

Thank you for commenting Canary, I appreciate it and the reassurance. ^^

I've read some unfortunate cases of people in their 30's getting it so that's been eating at me, but I'm holding onto the fact it's very unlikely. I'm glad it doesn't sound like FTD, I've been miserable not knowing what's the cause.

Again, thank you, I hope so too!

 

[RM3]

I have health anxiety. Unfortunately seeking reassurance does not help long term... It helps for a bit and then you move back to needing reassurance again or you find a new thing to worry about so you end up in a vicious circle. This anxiety is detrimental to your health. A way round it is to 'take action' with any concern you develop. Avoid endless googling of symptoms as you are looking for facts to back up your health worry. Instead, 'take action' and schedule an appointment with your doctor. Best wishes.

Hi @Spottydog. My oldest daughter also has Health anxiety and this is exactly what she does now (with encouragement). Has it investigated straightaway because we’ve learned that until this has been done, it is distressing and always the worst case scenario - despite any reasoning that I try and do with her. I have learned that this does not help someone with health anxiety (well, not in my daughters case anyway).
I hope you get some support soon Raine X

 

[~Raine]

Venting for a moment.

Just realizing I'm repeating words or phrases and it's driving me insane. I've been trying to carry on as normal but with the head pressure, impulsiveness, inability to focus or almost immediately forgetting something I'm doing unless reminded, having a hard time making myself eat enough, apathy and anhedonia being the major things bothering me, I'm struggling. My Focalin ER 20mg seems to help a very tiny amount but not by much. I might ask to increase the dosage.

I just want some answers and confirmation, and I'm so scared my new neuro won't take me seriously. My sleep medicine neuro that I saw early April wrote me off as crazy basically because I was asking to look into the issues. He was very rude about it and he genuinely looked at me like I was a nutcase for calmly expressing my concerns. I'm already afraid of people not taking me seriously so that didn't help.

Also, I'm getting more tinnitus episodes, and spasming in my ear, so that's worrisome. I'm pretty sure I've lost some of my hearing.

 

[maggie6445]

@~Raine did you look at the UK NHS website link I sent? There were some suggestions you could try to help calm and distract your thoughts. It also gave some links to other health websites that our health service suggests might be helpful.

It's Under health anxiety and up higher on this page

 

[Jessbow]

anhedonia could well be because all this worrying about everything constantly is simply sucking the joy out of your life.
You realise and see so many little bits and peices- that in its self is contra dementia- most sufferers have no insight whatsoever.
If you have the insight to know that you are not eating enough, eat more frequently- Many people with dementia forget they have eaten at all, and consequently end up overweight because they eat too much, forgetting they have already eaten

You almost eem the opposite of ADHD- you seem totally focussed on your own wellbeing, rather than lacking the ability to focus.

Looking at the side effects of Focalin ER 20mg, I'd want off them if i possibly could! Lots of side effects

 

[~Raine]

@~Raine did you look at the UK NHS website link I sent? There were some suggestions you could try to help calm and distract your thoughts. It also gave some links to other health websites that our health service suggests might be helpful.

It's Under health anxiety and up higher on this page

I did, thank you! I do have health anxiety but more so I'm anxious because of symptoms not going away at all.