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

~Raine

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Apr 10, 2024
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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
I'm not sure, the anhedonia and apathy hit me along with the memory issues really hard and out of nowhere once I started going downhill, so not sure. It feels like I'm just numb now and I have to force myself to do things or I'll just sit here focusing on how awful I feel. I wasn't sure about the insight since I know some people remain coherent enough to see their shortcomings until a certain point, but not sure.

I was diagnosed with ADHD even before this, I feel like I can hardly focus at all on anything now and I get frustrated trying to find something to do because nothing sates me. Things I used to like don't seem to do anything anymore either, I can feel a big difference when trying to watch youtube creators or tv shows I like. I just feel incapable of feeling anything.

I might look into a different medication after trying this a bit longer, I've only been on it since late April. It seems to help my apathy a little but not by much.

I'm having a hard time recalling conversations and events too, which is what's honestly stressing me the most. I can remember some, but others I just can't. I dunno. I feel like I'm hardly here.
 
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~Raine

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Apr 10, 2024
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Update: Head pressure on right front side along head and occasionally left back side and behind my right eye feel more intense the past two days, and in turn makes it harder to think, idk if it's more brain damage if that's what it is but I'm going crazy. Also tinnitus has been more frequent, driving me even MORE crazy.

Memory is still suffering, leaving things open/forgetting where I've put something minutes after I've put it down, struggling to remember things that have happened during the day or things I've done, sometimes things I've said but I'm mostly able to remember if I've said something previously. It's hard to get up and make food, and after eating pizza that seemed to trigger my head pressure, I'm afraid to eat anything non-inflammatory. But making healthy food is so difficult when I don't have any income and my parents are who I rely on for food. I'd like to do meal prep so I don't have to worry about struggling to cook, but can't even afford that either. I'm limited to what my parents can buy, and they're feeding my sister in her 40's who had to move back in now as well. I just realized I had typed "Trying to eat anti-inflammatory foods but I'm limited to what my parents can buy, and they're feeding my sister in her 40's who had to move back in now as well." and forgot about it. Welp.

Motivation to do anything is dwindling, still trying to talk to my friends as much as I can as they help cheer me up and feel less lonely right now. Been trying to force myself to do things even if it reminds me of how I feel so dull and lifeless compared to back in March.

I'm also exhausted all the time which doesn't help. I have the moderate sleep apnea, but I've lost 10lbs (190 to 180, I'm 5'7") from not eating much/forgetting to eat, so that might be a blessing in disguise. I won't be able to do the at home sleep test still until July to attempt to get my insurance to give me a CPAP again. And my neuro appointment is still June 7th. Three weeks feels like forever. I'm terrified I'm going to be dismissed by my new neuro and I'm even more terrified of finding out I have some kind of dementia this young. I've had issues for a while with my PCOS, endometriosis, dental issues from having a small mouth, getting shingles at 21(which never popped back up), the head pressure in that small spot on the back of my head back then popping up before or after the shingles. I don't know if being born two months early would of done anything either, I was healthy as far as I know.

I'm losing my mind and I hate that nobody in my family is advocating for me.
 

~Raine

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Apr 10, 2024
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Still hanging in there. I feel so lonely and I just want to enjoy doing things again. Once I get some kind of answer I'll be able to make peace with whatever is going on, at least. Ugh.
 

Izzy

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Still hanging in there. I feel so lonely and I just want to enjoy doing things again. Once I get some kind of answer I'll be able to make peace with whatever is going on, at least. Ugh.

Wishing you strength. I hope you get some answers soon.
 

~Raine

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Apr 10, 2024
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Yet another vent. I feel like I'm losing control of my own body and mind, it feels harder to physically coordinate myself, I feel like I've had the life sucked out of me and nothing makes me happy anymore and I'm just faking it or reacting.
I've been having breakdowns because I'm so scared of dying, especially like this. I'm praying for it not to be FTD but I feel like everyday I'm losing my inhibitions more and my short term memory is so shot. I can hardly remember what I did earlier, let alone yesterday. I've just been wanting to sleep because everything is difficult and I don't enjoy myself. I hate this so much.
Still nothing on a neuropsych referral. Two weeks until my neuro. I'm losing it.
 

Collywobbles

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Feb 27, 2018
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I think Grannie G was in a rush, and meant ‘reassured’ not ‘pressured’. I also hope you find reassurance. Take care x
 

~Raine

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Apr 10, 2024
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Finally an update.

Memory is still awful, I also just had an episode where I thought my neuro appointment was earlier today but it was yesterday. I could hardly remember what happened a few hours ago. I keep misplacing things, struggling with time, etc.

Neuro said my vitamin B12 was low, not on the low side of normal like my primary said, and she said my vitamin D was low even though my primary told me it was normal now too?
I've been taking vitamin B12 for about 2-3 months I think. I'm gonna try to take more vitamin D.
She said that she thinks the neuropsych testing is appropriate and will be more helpful than anything else she can do at this point.

She mentioned she didn't think an MRI or another scan was necessary because they were clear three years ago. And that dementia would take 5-10 years to show up. Correct me if I'm wrong but I thought that wasn't true-

But anyways she suggested it wouldn't hurt to call Emory University and see if they received my referral. She also said it did indeed get sent by my primary. I'm gonna call on Monday to see if it's in their system and try to arrange the whole trip. It's going to be hard making it by myself.

She was also going to refer me to an ENT or Audiology for the tinnitus in my ear as well as hearing loss that's been progressing with the memory issues.

She also suggested to work on getting another CPAP to help my mild sleep apnea. I was told before it was moderate so I don't know what it is anymore, lol.

I also mentioned I wanted to add to my family history that my maternal uncle having FTD and maternal grandmother having vascular dementia and she was like "Oh interesting, that's very young." even though he just turned 65 shortly after he was diagnosed.

So yeah, I liked her more than I thought I would. I just was hoping to get a PET scan or genetic testing. I was afraid to ask for it unless she brought it up because I didn't want to be written off as a hypochondriac or overly anxious.
 

~Raine

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Apr 10, 2024
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Apparently this was listed on my retired neuro's notes back during my sleep study last year. I wasn't aware I had central sleep apneas. Nobody bothered to look into this or tell me?? Like, hey, maybe central sleep apneas is a cause for concern? Even my new neuro didn't mention anything about central sleep apnea.

"Her PSG in April confirmed mild OSA that was moderate while supine. Central sleep apneas were also noted.
This improved with CPAP +5."

I'm so irritated and tired of this. Yet another thing that points me towards this awful disease.
 

Collywobbles

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Feb 27, 2018
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Apparently this was listed on my retired neuro's notes back during my sleep study last year. I wasn't aware I had central sleep apneas. Nobody bothered to look into this or tell me?? Like, hey, maybe central sleep apneas is a cause for concern? Even my new neuro didn't mention anything about central sleep apnea.

"Her PSG in April confirmed mild OSA that was moderate while supine. Central sleep apneas were also noted.
This improved with CPAP +5."

I'm so irritated and tired of this. Yet another thing that points me towards this awful disease.
While sleep disturbance is a symptom of dementia, sleep apnea isn’t. If anything, a diagnosis that your sleep disturbance is caused by apnea, points away from dementia.
 

Jessbow

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Mar 1, 2013
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Many people suffer from sleep apnea, Often resolves itself without treatment, very unlikely you'd need CPAP.

Vitamin D is easy solved- oily fish and sunshine.
Many of us have B12 difficiency- commonly known as anaemia

I am not convinced tha anyone or anything will convince you that you dont have early onset dementia
 

Angel55

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Oct 23, 2023
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💗 I have to agree with Jessbow having read your threads and not commented until now.

My OH has sleep apnea and he 100% does not have a dementia illness. The machine helps because it is mild but he could also help himself a little more lol, less stress, more exercise etc with the phrase you can take a horse to water but you can't make it drink.

Stress/anxiety , the mind in general , the engine of the ship as I call it.. can keep you awake and it becomes a complete cycle.

I hope you find the help you clearly seek and the answers you clearly need.
 

maggie6445

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Dec 29, 2023
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I too agree with Jessbow and Angel55.

You are continually looking for symptoms to support your idea that you have dementia. Please,please listen to the medics you are seeing and stop dismissing the ones who don't agree with you.

The more anxious and stressed you are the more your symptoms will get worse. Stress and anxiety can affect mood , memory and sleep.

I too hope you get the help you need and please listen to your medics and let them help you.

Life is to be enjoyed, please let the Doctors help you to enjoy it .
❤️
 

~Raine

Registered User
Apr 10, 2024
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I really am trying to take my doctor's words for it, it's difficult when I'm struggling with my short term memory to the point of forgetting things seconds later, and I woke up today very confused and am struggling even more with being able to think. I'm so tired and frustrated.
I had two bags of sour candy (I went overboard a bit-) yesterday and some pizza since I've been eating pretty healthily, so now I'm worried I made things worse by just eating that.
I'll try my best to stop worrying about dementia, I'm just terrified and the process of getting answers is so tedious and draining when I'm the only one advocating for myself in the household.
 

Louise7

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Mar 25, 2016
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Hello @~Raine sorry to hear that you are still struggling but please try not to worry about eating two bags of sweets and some pizza. A treat now again whilst eating pretty healthy the rest of the time isn't going to make anything worse. I'm sorry that the process is taking so long for you but at least things are moving in the right direction and the medics are taking proactive steps in relation to your sleep apnea and your hearing loss and tinnitus. Hopefully things will start to get better for you once these issues are treated as being constantly tired can be very debilitating.