Just waiting for now. Exhausted. (26F)

~Raine

Registered User
Apr 10, 2024
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0
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It may not feel like it, but that does at least sound hopeful that you’ve moved away from a dementia diagnosis, whilst being on the right track to see the correct specialist next.
I'm hoping I'll start seeing some improvement soon, the memory test was reassuring at least. :) Progress!
 

~Raine

Registered User
Apr 10, 2024
59
0
26
Well done @~Raine for working through your appointment with your Dr so positively. Together you have made some good progress and working towards your next steps. You make very good notes and observations which you can refer to when you next see your mental health specialists . Thanks for posting and updating us.
I appreciate everyone's support, it really helps to have a safe place to talk about things. ^^ Thank you, I tried my best to listen to her suggestions and try anything she had in mind. I'm blessed to have a kind doctor. She even words things in her notes to where it'll have a higher chance of being accepted by my stubborn insurance, lol.
 

~Raine

Registered User
Apr 10, 2024
59
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Well apparently the neuropsych I was referred to doesn't even accept my insurance, so I'm stuck again. It's looking like I'm going to have to somehow get to one two hours away.

Sitting here crying because I was so happy to make some progress and now it's gone.
 

Kevinl

Registered User
Aug 24, 2013
6,983
0
Salford
I take it you're posting from outside the UK, so not covered by the National Health Service.
We might moan about the state the NHS is in but having to deal with insurance companies...what an absolute nightmare for you at a time like this, all you don't need. K
 

DeeCee7

Registered User
Oct 13, 2023
333
0
Oh dear , ~Raine that’s a disappointment for you. But I am sure the distance can be overcome. Is this other neuropsych the nearest to you that accepts your insurance? What are the barriers to you travelling there? Do you drive, or is there a train or bus? Can you manage alone or will a family member or friend be able to take you? I don’t know about health insurance in your country, but is there any help with transport costs due to the distance involved? Have a think and a few deep breaths!
 

~Raine

Registered User
Apr 10, 2024
59
0
26
Oh dear , ~Raine that’s a disappointment for you. But I am sure the distance can be overcome. Is this other neuropsych the nearest to you that accepts your insurance? What are the barriers to you travelling there? Do you drive, or is there a train or bus? Can you manage alone or will a family member or friend be able to take you? I don’t know about health insurance in your country, but is there any help with transport costs due to the distance involved? Have a think and a few deep breaths!
I'm unable to drive and only have my permit, so I wouldn't be able to take myself unfortunately.
I'll be able to take a bus, thankfully. I'll have to get a ride to the bus station 30 mins away but it seems doable! There's a well received place that does take my insurance, so fingers crossed!
 

~Raine

Registered User
Apr 10, 2024
59
0
26
I take it you're posting from outside the UK, so not covered by the National Health Service.
We might moan about the state the NHS is in but having to deal with insurance companies...what an absolute nightmare for you at a time like this, all you don't need. K
Yeah, I'm in the US unfortunately, lol. It's alright, I'm getting things sorted for now at least.
 

Kevinl

Registered User
Aug 24, 2013
6,983
0
Salford
Not a problem, my late mum was from LA, I have more family in the USA than the UK, just alters the advise you get on here where UK prescription all cost the same from Aricept (now called Donepezil) to whatever starts with a Z, also they're free after a certain age too.
No disrespect to the USA but when it comes to health and welfare, less than perfect though it is the UK leaves you standing in the blocks.
People in the UK don't realise how lucky they are and apart from my USA relatives two of our children live outside the UK and have similar issues with the costs of medication,.
Neither have any conditions that require regular medication but a trip to the doctors costs them money as does anything prescribed for them.
We get it all for if not free at a fixed price irrespective of the cost to the NHS.
Time for me to shut up. K
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,589
0
I think @Kevinl that we forget how lucky we are to have the NHS, even with all its faults.

@-Raine, i do hope that you manage to get the transport issues sorted, and please keep posting on the forum for support.
 

Lillian Magellan

New member
Apr 24, 2024
1
0
I appreciate everyone's kindness here while I'm dealing with these symptoms. I've gone downhill the past month and I'm just, having to wait for appointments right now.

I'm noticing myself having more trouble with remembering recent events. I can barely remember what I did yesterday or a few hours ago, even a few minutes ago.

Time seems to completely fly by or not move at all. I thought it was evening earlier but it was only 10am. I went downstairs to talk with my mother about taking an allergy tablet then forgot what I came down for very quickly.

I asked my mom to put some chicken wings in the oven for me and said I'd get them out when they were finished, so I did. I went down, and reached up to turn the light off above the stove, thinking I was turning off the stove itself. I realized fairly quickly but it also took me a moment to remember which buttons to press to turn it off. I felt genuinely confused, not like a momentary lapse.

I forgot if I took my concerta this morning, so I didn't trust my memory and just didn't take it so I wouldn't double dose. I'm pretty sure I didn't and that I was mixing it up with yesterday, but still.

Another thing that's gotten alot worse is I have a constant pressure on the right half of my head, and it feels like it's tingling, almost like it's low circulation. But it got worse when my memory/thinking worsened this past month.

I'm also much more tired, sleeping around 12 hours because it's just so tiring to be awake with this going on.

This is driving me insane. I also asked my mother to clarify what kind of dementia my family members on her side have had/have. My grandmother apparently had ministrokes that gave her hers, which I'm assuming would be vascular dementia. She thinks my great grandmother had alzheimers but isn't sure, and my uncle was diagnosed with frontotemporal. My uncle was diagnosed right before his 65th birthday. I'm pretty sure my grandmother and great grandmother were past 65, but I'm honestly afraid to ask if they were younger because it'd just fuel my fears.

Nobody in the house thinks anything is wrong with me, but I'm noticing my own shortcomings. I've been trying to ignore them or make excuses for myself, but everything's pointing to what I'm afraid of.

I even updated end-of-life care in my patient portal stating what my wishes were for my pets and belongings because I feel so sure about this. I don't know what to do. I feel helpless and waiting for an official diagnosis of anything is taking so long.
Oh God. I'm also going through the same yet I'm a dimentia patient (mum)carerer. I'm so in denial but many have noticed. I go to the grocery , forget the keys there. Go back looking for them, find them but forget them again. So embarrassing. Also a neighbor talks to me seems I've never seen them in my life yet strangers look so familiar to me. I can't spell words correctly, I can't remember if I fed mum or not or if I gave her medication. I notice I'm nolonger meticulous in the house, neither I'm I taking care of myself as I used to. No more good grooming. As a Kenyan not sure where to get diagnosed before I break the news to my family. I'm in my late 40s
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,589
0
Oh God. I'm also going through the same yet I'm a dimentia patient (mum)carerer. I'm so in denial but many have noticed. I go to the grocery , forget the keys there. Go back looking for them, find them but forget them again. So embarrassing. Also a neighbor talks to me seems I've never seen them in my life yet strangers look so familiar to me. I can't spell words correctly, I can't remember if I fed mum or not or if I gave her medication. I notice I'm nolonger meticulous in the house, neither I'm I taking care of myself as I used to. No more good grooming. As a Kenyan not sure where to get diagnosed before I break the news to my family. I'm in my late 40s
Hello @Lillian Magellan and welcome to the Dementia Support Forum. This is a UK based site but I have found a website which is based in Kenya which you might find useful and I have attached a link for your information. I would also suggest that you contact your doctor about your symptoms, they are probably nothing to worry about but best to get yourself checked out.

 

~Raine

Registered User
Apr 10, 2024
59
0
26
So, update. Just waiting on my doctor to get back to me on Monday. With how the referral is setup in my patient portal, the people that I'm being referred to aren't able to actually see the referral because they're not in the same hospital system or whatever. I also noticed the "refer a patient" section on each website for the local place and the one that I'm trying to get an appointment with, so I mentioned to my doctor that I think she'd need to go through that instead of my patient portal.

I linked that together with the local place I was originally referred to since they said they hadn't received any referrals.

The referral needed to be completed by May 1st and she's out of office until the 29th so I'm stressing. I can tell I'm having a harder time verbally speaking and it's not helping me feel any better. I also noticed my motor skills seem off and I'm having even harder of a time concentrating or remembering things. This is a nightmare and I'm afraid I'm not going to be coherent enough to even go to the appointment by myself. But I don't have a choice but to go if I want neuropsych testing. Plus, I'm assuming I'll have to go more than one time.

Honestly, yesterday I cried more than I've cried in years because I feel so alone. I've had people tell me I'm being insensitive to people who've watched their loved ones deteriorate and that they'd notice if anything was wrong. But I do, I know somethings very wrong and I'm fighting for myself with nobody irl advocating for me. I'm just praying that it's not what I'm fearing. I'm hoping to get a PET scan in July if my insurance won't deny it and if I'm still coherent.

I'm terrified that I just seem to get worse everyday. It feels like doing things I enjoy is just useless and I feel like my familiarity with my friends, my literal lifeline for the past 4-5 years, is slipping.

[Edit: I'm also going to start my new ADHD medication today (Focalin XR) so I'm praying so hard that it'll give me some kind of relief. Also still waiting on my blood test results.]
 
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~Raine

Registered User
Apr 10, 2024
59
0
26
Oh God. I'm also going through the same yet I'm a dimentia patient (mum)carerer. I'm so in denial but many have noticed. I go to the grocery , forget the keys there. Go back looking for them, find them but forget them again. So embarrassing. Also a neighbor talks to me seems I've never seen them in my life yet strangers look so familiar to me. I can't spell words correctly, I can't remember if I fed mum or not or if I gave her medication. I notice I'm nolonger meticulous in the house, neither I'm I taking care of myself as I used to. No more good grooming. As a Kenyan not sure where to get diagnosed before I break the news to my family. I'm in my late 40s
I wish you the best, I hope everything turns out okay!
 

rebeccaperth

New member
Apr 28, 2024
4
0
I appreciate everyone's kindness here while I'm dealing with these symptoms. I've gone downhill the past month and I'm just, having to wait for appointments right now.

I'm noticing myself having more trouble with remembering recent events. I can barely remember what I did yesterday or a few hours ago, even a few minutes ago.

Time seems to completely fly by or not move at all. I thought it was evening earlier but it was only 10am. I went downstairs to talk with my mother about taking an allergy tablet then forgot what I came down for very quickly.

I asked my mom to put some chicken wings in the oven for me and said I'd get them out when they were finished, so I did. I went down, and reached up to turn the light off above the stove, thinking I was turning off the stove itself. I realized fairly quickly but it also took me a moment to remember which buttons to press to turn it off. I felt genuinely confused, not like a momentary lapse.

I forgot if I took my concerta this morning, so I didn't trust my memory and just didn't take it so I wouldn't double dose. I'm pretty sure I didn't and that I was mixing it up with yesterday, but still.

Another thing that's gotten alot worse is I have a constant pressure on the right half of my head, and it feels like it's tingling, almost like it's low circulation. But it got worse when my memory/thinking worsened this past month.

I'm also much more tired, sleeping around 12 hours because it's just so tiring to be awake with this going on.

This is driving me insane. I also asked my mother to clarify what kind of dementia my family members on her side have had/have. My grandmother apparently had ministrokes that gave her hers, which I'm assuming would be vascular dementia. She thinks my great grandmother had alzheimers but isn't sure, and my uncle was diagnosed with frontotemporal. My uncle was diagnosed right before his 65th birthday. I'm pretty sure my grandmother and great grandmother were past 65, but I'm honestly afraid to ask if they were younger because it'd just fuel my fears.

Nobody in the house thinks anything is wrong with me, but I'm noticing my own shortcomings. I've been trying to ignore them or make excuses for myself, but everything's pointing to what I'm afraid of.

I even updated end-of-life care in my patient portal stating what my wishes were for my pets and belongings because I feel so sure about this. I don't know what to do. I feel helpless and waiting for an official diagnosis of anything is taking so long.
Have you had your oestrogen and iron levels checked? I also have adhd and my cognition is **** before my period due to oestrogen drops. I now wear the patches and take prometrium and it helps
 

~Raine

Registered User
Apr 10, 2024
59
0
26
Have you had your oestrogen and iron levels checked? I also have adhd and my cognition is **** before my period due to oestrogen drops. I now wear the patches and take prometrium and it helps
I'm waiting on results for iron bloodwork to come back but I I did read your message earlier and sent a message afterwards to my gynecologist asking if I could do a hormone panel, thank you for the suggestion!
 

~Raine

Registered User
Apr 10, 2024
59
0
26
Noticed I'm struggling more with my words and losing my train of thought, as well as catching myself starting to repeat phrases. Also making typos more and having to recheck things, and somehow still missing them sometimes. Still feeling like I'm having some coordination issues, too.

I keep calming myself down then something else happens and I get anxious all over again.

I'm at the point of being too afraid to do anything because I'm scared of noticing more things that are wrong. I just want answers and I keep getting worse.

Hoping my doctor will reply to me tomorrow about the referral.