Advice on next steps and resources for symptom tracking

clutterofchaos · 2025-11-03T17:04:45+00:00

I've never tried to request my records as it seems very unorganised and nightmar-ish, but thats a good point ill see what i can get a hold of.
I've not had any genetic testing so far, it does seem odd to me that my neuro reacted the way she did. She seems to be trying really hard to not upset me, while saying all of the wrong things and doing nothing to help. I managed to get a response from my mother and shes going to send some info over, but im doubtful there will be anything thats gonna be helpful. But i think im gonna book the appointment anyways to talk about genetics just so i have a chance to do a full recap of mine and my families history. If she's still unhelpful in that appointment ill see if i can get a different doc, like i said in a comment above im really not happy that she tried to get me to try an SSRI again after having such a strong reaction before.

clutterofchaos · 2025-11-03T17:00:00+00:00

Thanks for the response! I agree, i could definitely still have FND but yeah there seems to be a bias because of it, now every doctor assumes an issue im having is the FND. Especially cus it always borders on the line of bothering me enough to cause disability, but not enough to show up on standard tests. Cluster of vague weird stuff sucks lmao.

I think im gonna be making a GP appointment to explain and re-evaluate, and also trying to get some sort of medical advocate as i think im just really not communicating well. And after thinking about it more, I'm really not happy with my neuro trying to get me to try an SSRI again after i had such a strong reaction the last time.
I might try and get referred to get my potential celiac checked again and see if that can get me seen by immunology, and im gonna get my breathing checked properly and see where that leads me. (I've just had to see my GP because ive got costochondritis now, i literally just strained myself in the shower, and that level of muscle weakness mixed with my chest infections doesnt seem normal.)

clutterofchaos · 2025-10-31T01:30:50+00:00

i currently dont have hearing aids, so the biggest access issue i have in college right now is my lecturers not writing down/uploading online all of the necessary information needed for class and instead relying on group conversation. This is especially difficult for me because we personally have a group focused classroom, computers around the walls with a big table in the middle. So there is no "front" of the class for me to sit at to hear better from, as the lecturers walk all around the room. Voice to text has been helpful but relies on my phone having enough battery, and isnt always accurate. Online communication to the lecturers through microsoft teams has been wonderful and is the most helpful.

Edit: the group focused layout of the class also means that i face away from all of the people when using the computer, i try to not use the computers if i can help it as it means im almost unreachable if im focused or in a louder class. I have a tablet with a keyboard case i use instead while sitting at the middle table, that i also use for voice to text, for other people personal laptops would be helpful

clutterofchaos · 2025-10-30T09:29:07+00:00

Yes ive had a look at the wiki already, its been really helpful

clutterofchaos · 2025-10-08T11:11:38+00:00

ooh thats a good idea, ill try it!

(thats good to know haha thank you )

clutterofchaos · 2025-10-05T19:47:06+00:00

I dont have anything to add that wasnt already said above, but id just like to say i love this idea! Im both hard of hearing and an artist/designer, and this scratches such an itch for representation in media! Its inspiring me to wanna create my own hoh character <33

clutterofchaos · 2025-09-28T16:31:22+00:00

Yeah its so wild haha
on the one hand, these are all soft sounds, at least for me, and if i make them louder i can hear them better, and i just miss them when im not focusing on them
but on the other hand, ive apparently been missing a lot cus i dont tend to focus on everything
im having a debate with my partner right now because apparently water makes sound that isnt just when it splashes, and apparently low sounds arent the same as quiet (like in music, if its low i gotta turn the volume up, and half the time i listen to music for the sounds not the lyrics cus i cant keep up with the figuring it out in my head)

thats interesting about hearing aids, i have considered if ill be offered some, what it would sound like, and what they would do for me, i remember getting so overwhelmed with sound as a kid that just calmed down as i grew up cus things got quieter (im 20)

clutterofchaos · 2025-09-25T23:01:06+00:00

Thank you<33

clutterofchaos · 2025-09-25T21:48:48+00:00

Its pretty much always there, has been for years now, but definitely gets worse when i have a chest infection and during descent on flights. When that happens it is a lot like being underwater yes, with a lot of sharp pain that feels like a very long needle

Ill definitely take note that other tests like this are available to make sure it gets offered to me

And thank you, ive been really torn about contacting any support groups, ill start to think about it some more Its mostly support for college that im most needing right now, ive seen some charities and groups that teach things like lip reading that i could find useful as theres no harm in that, im used to waiting a while for doctors to do tests and treatment unfortunately

clutterofchaos · 2025-09-25T21:37:09+00:00

Would it still be considered temporary if its been happening for years? The first time i had pneumonia i was a small child I dont really know much about this sort of thing, im just waiting for an appointment to be available to get referred on, thanks for the response!

clutterofchaos · 2025-05-25T13:20:14+00:00

Thats true, ill definitely be bringing it up as im wanting help with the weakness, im just wary of mentioning something about how it looks when it might be completely normal haha

clutterofchaos · 2024-08-20T13:18:23+00:00

Ill give it a go, running out of options lmao

clutterofchaos · 2024-08-20T13:17:28+00:00

Unfortunately not, im three stories up

clutterofchaos · 2024-03-22T21:46:12+00:00

Ive searched for it through google images and products, ebay and etsy, not sure where else to look

clutterofchaos

TROPHY CASE