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narcolepsy
Pavlov
International star



Pavlov wrote:
is there anyone here who has it/knows someone who has it, who can tell me how you go by getting it taken seriously by doctors and such, and potentially get it tested

i just have no idea how to bring it up without seeming insane, its a rather unusual thing to suddenly bring up to a doctor, they might think im a hypochondriac, its not like i can exactly prove it either


(this is not me self diagnosing the goal is to find out if i have the diagnose or not)

(i dont have severe sleep issues,  im far from the stereotype of a narcoleptic who falls asleep everywhere, but i do have problems with my body going limp when im laughing or my face looking drunk when im talking to people. and i tend to hallucinate voices or a presence when im waking up or falling asleep, and i can enter rem sleep while im just napping in the daytime.  and i have once experienced being fully awake in a conversation, laughing and suddenly just going limp and blacking out and then waking up couple of seconds later, thought i was having a stroke or something shits scary)
15
Posts: 29813
Date: 04-06-2020 10:32 | Times changed: 4
Pavlov
International star



Pavlov wrote:
you cant tell me there is not a single person on vp who has narcolepsy, i thought vp was the official mental health meeting place
15
Posts: 29813
Date: 04-06-2020 10:43
Account deleted




wrote:
Sorry to hear about all of this, I don't know how I can help

And telling your doctor I think you just have to straight up say you have a concern of it since you tick off so many things indicating you could have it
Date: 04-06-2020 10:47
Private
Popstar



ouch wrote:
Pavlov wrote:
you cant tell me there is not a single person on vp who has narcolepsy, i thought vp was the official mental health meeting place
Its not a mental illness so mayb 
16
Posts: 95491
Date: 04-06-2020 10:47
Pavlov
International star



Pavlov wrote:
ouch wrote:
Pavlov wrote:
you cant tell me there is not a single person on vp who has narcolepsy, i thought vp was the official mental health meeting place
Its not a mental illness so mayb 
physical brain illness then
15
Posts: 29813
Date: 04-06-2020 10:48
Private
Popstar



ouch wrote:
Pavlov wrote:
ouch wrote:
Pavlov wrote:
you cant tell me there is not a single person on vp who has narcolepsy, i thought vp was the official mental health meeting place
Its not a mental illness so mayb 
physical brain illness then
Do we hav meeting place for that too
We might actually now that I thinka bt it hmm 
16
Posts: 95491
Date: 04-06-2020 10:49
Account deleted




wrote:
Pavlov wrote:
C4TH3DR4L wrote:
Sorry to hear about all of this, I don't know how I can help

And telling your doctor I think you just have to straight up say you have a concern of it since you tick off so many things indicating you could have it
oh yeah another issue is the fact that i dont have a doctor because of where i live, the doctors here usually just stick around for like 0,5 - 1 year before they move away so if i go to a doctor its going to be a stranger who is likely to move away very soon
It is worth mentioning anyways, it will be in your files even with a new doctor. You can't let that hinder you from getting this solved and sorted
Date: 04-06-2020 10:58
Pavlov
International star



Pavlov wrote:
C4TH3DR4L wrote:
Pavlov wrote:
C4TH3DR4L wrote:
Sorry to hear about all of this, I don't know how I can help

And telling your doctor I think you just have to straight up say you have a concern of it since you tick off so many things indicating you could have it
oh yeah another issue is the fact that i dont have a doctor because of where i live, the doctors here usually just stick around for like 0,5 - 1 year before they move away so if i go to a doctor its going to be a stranger who is likely to move away very soon
It is worth mentioning anyways, it will be in your files even with a new doctor. You can't let that hinder you from getting this solved and sorted
should i just say what i suspect it is or should i just describe the symptoms and hint it to the doctor so i dont seem like a google therapist
15
Posts: 29813
Date: 04-06-2020 11:01
Account deleted




wrote:
Pavlov wrote:
C4TH3DR4L wrote:
Pavlov wrote:
oh yeah another issue is the fact that i dont have a doctor because of where i live, the doctors here usually just stick around for like 0,5 - 1 year before they move away so if i go to a doctor its going to be a stranger who is likely to move away very soon
It is worth mentioning anyways, it will be in your files even with a new doctor. You can't let that hinder you from getting this solved and sorted
should i just say what i suspect it is or should i just describe the symptoms and hint it to the doctor so i dont seem like a google therapist
You could start sharing what you've experienced (the symptoms) and you worry you might have it

Don't worry sounding like you google stuff, if your symptoms match then he will look into it regardless :-)
Date: 04-06-2020 11:03
Pavlov
International star



Pavlov wrote:
C4TH3DR4L wrote:
Pavlov wrote:
C4TH3DR4L wrote:
It is worth mentioning anyways, it will be in your files even with a new doctor. You can't let that hinder you from getting this solved and sorted
should i just say what i suspect it is or should i just describe the symptoms and hint it to the doctor so i dont seem like a google therapist
You could start sharing what you've experienced (the symptoms) and you worry you might have it

Don't worry sounding like you google stuff, if your symptoms match then he will look into it regardless :-)
yeah, im just afraid that if i bring it up it will seem so farfetched to them and just not be believed by anyone, im barely able to believe myself, 
15
Posts: 29813
Date: 04-06-2020 11:05
Pavlov
International star



Pavlov wrote:
in b4 i bring a powerpoint presentation to my doctor that explains the reasons for why i most likely have all the symtoms for a narcoplepsy diagnose
15
Posts: 29813
Date: 04-06-2020 11:29
Private
World famous



bee wrote:
kinda in the same situation rn. my doctor couldnt figure out what was wrong with me so he send me to a specialist, who im seeing in a couple weeks. and someone suggested what could be wrong with me and i looked it up and it makes so much sense. so im trying to figure out how to introduce that idea the right way to the specialist. but im thinking im gonna make a list of all my symptoms just to make sure i dont accidentally leave something out. i thought about making a list with all the symptoms from suspected illness and check all that i can relate to, but not sure if i wanna do that, might be weird idk 
18
Posts: 13567
Date: 04-06-2020 11:40
Pavlov
International star



Pavlov wrote:
bee wrote:
kinda in the same situation rn. my doctor couldnt figure out what was wrong with me so he send me to a specialist, who im seeing in a couple weeks. and someone suggested what could be wrong with me and i looked it up and it makes so much sense. so im trying to figure out how to introduce that idea the right way to the specialist. but im thinking im gonna make a list of all my symptoms just to make sure i dont accidentally leave something out. i thought about making a list with all the symptoms from suspected illness and check all that i can relate to, but not sure if i wanna do that, might be weird idk 
maybe a dumb question but what kinda specialist are you going to?
15
Posts: 29813
Date: 04-06-2020 11:43
Private
World famous



bee wrote:
Pavlov wrote:
bee wrote:
kinda in the same situation rn. my doctor couldnt figure out what was wrong with me so he send me to a specialist, who im seeing in a couple weeks. and someone suggested what could be wrong with me and i looked it up and it makes so much sense. so im trying to figure out how to introduce that idea the right way to the specialist. but im thinking im gonna make a list of all my symptoms just to make sure i dont accidentally leave something out. i thought about making a list with all the symptoms from suspected illness and check all that i can relate to, but not sure if i wanna do that, might be weird idk 
maybe a dumb question but what kinda specialist are you going to?
uhh not even sure what its called but in the email i got they call it diagnosis center? as far as i could understand from my doctor its like a bunch of doctors all with knowledge in different areas and after i have been tested or something theyre gonna get together to discuss my condition and symptoms to find out whats wrong with me. not sure this is correct but its something like that 
18
Posts: 13567
Date: 04-06-2020 11:50
Account deleted




wrote:
have you done a sleep study and can you see a different doctor?  Ideally you would see a sleep physician to get that diagnosis.

keeping a sleep diary might be useful as well. 
Date: 04-06-2020 13:39
Account deleted




wrote:
to get doctors to take your sleep seriously you really need to emphasize how tired you are. tell them it impacts your school/work/driving. 
Date: 04-06-2020 13:42
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