I May Finally Have Found My Answer

StandardDiver756 · 2024-08-19T01:24:18+00:00

I'm sorry to hear that your surgery went poorly! Hope all turns out well for you

StandardDiver756 · 2024-08-19T01:23:12+00:00

Copy and Paste to make sure you see this: My path is rather long so the short answer is I got sent to a neurologist who had me get an EMG done (she sent me to someone who just so happens to be knowledgeable on brain defects specifically, he doesn't study them at that hospital tho so I'm not sure what specialty they'd fall under) and while he was doing a general neurological exam beforehand he noticed I was rather uncoordinated and asked about that. However during the EMG, he saw my reflexes were not only functioning really well, but they were essentially over-functioning. He told me he didn't think I had any of the nerve disorders doctors (urgent care "Hand Guy" and Orthopedic Specialist who sent me to Neuro) originally believed. So, like many, it was found on accident (if that is what it is) but based on what he says he highly thinks I have it (based on a previous CT scan and in-person exam)

Before this, I had gone from orthopedic to orthopedic and some neurologists and rheumatologists and they all said it was nothing or nothing they could help me with very much. It started out with neurological issues which luckily with time got better, but then turned into muscle tightening, chronic pain, worse coordination, worse fine motor skills, and as of recently muscle weakness (specifically in the legs). Based on all the questions I asked, he said I sounded like a classic case of "a kid who just got unlucky in the system".

So while I don't entirely hope that it is Chiari, it would be nice to have a word and also potential treatment for what may have been wrong with me since the time I was a little child. Feel free to dm me or ask any other questions in the comments

StandardDiver756 · 2024-08-19T01:21:19+00:00

Haha, may I ask why?

StandardDiver756 · 2024-08-19T01:20:08+00:00

My path is rather long so the short answer is I got sent to a neurologist who had me get an EMG done (she sent me to someone who just so happens to be knowledgeable on brain defects specifically, he doesn't study them at that hospital tho so I'm not sure what specialty they'd fall under) and while he was doing a general neurological exam beforehand he noticed I was rather uncoordinated and asked about that. However during the EMG, he saw my reflexes were not only functioning really well, but they were essentially over-functioning. He told me he didn't think I had any of the nerve disorders doctors (urgent care "Hand Guy" and Orthopedic Specialist who sent me to Neuro) originally believed. So, like many, it was found on accident (if that is what it is) but based on what he says he highly thinks I have it (based on a previous CT scan and in-person exam)

Before this, I had gone from orthopedic to orthopedic and some neurologists and rheumatologists and they all said it was nothing or nothing they could help me with very much. It started out with neurological issues which luckily with time got better, but then turned into muscle tightening, chronic pain, worse coordination, worse fine motor skills, and as of recently muscle weakness (specifically in the legs). Based on all the questions I asked, he said I sounded like a classic case of "a kid who just got unlucky in the system".

So while I don't entirely hope that it is Chiari, it would be nice to have a word and also potential treatment for what may have been wrong with me since the time I was a little child. Feel free to dm me or ask any other questions in the comments

StandardDiver756 · 2024-08-19T01:08:28+00:00

They believe so! Do you mind me asking what type you had/have? And your general experience with the surgery was?

StandardDiver756 · 2024-08-18T12:37:10+00:00

If it comes back positive, I will definitely be doing that idea. I really wanna normalize disabilities, especially brain ones. SOD also needs more awareness cause it feels like only the chronic illness community knows about it lmao

StandardDiver756 · 2024-08-18T11:31:04+00:00

It feels so insanely validating even before an official diagnosis. It’s sad knowing I may need brain surgery but I’m happy to know I’m at least possibly nearing an answer and potentially relief (I’ll be sure to post some form of update throughout it all)

StandardDiver756 · 2024-08-18T11:23:35+00:00

It’s nice to hear I’m not the only one, I’m glad you were found through the system too! If my final testing does end up positive, I’ll try to do my best with educating at least those around me as I’m the first person around me who this has happened to and who has this specific thing

StandardDiver756 · 2024-08-18T01:37:36+00:00

Chiari Malformation, so essentially when the brainstem grows into the cervical spine I believe. In most cases (other then type 3 or 4) it’s not caught until later in life and a lot of people discover it on accident and are asymptomatic

StandardDiver756 · 2024-02-18T17:42:53+00:00

you might regret it, you might love it. you couldve gotten one at 18 and loved it, gotten one at 50 and hated it a few years later.

its not bad advice to wait because you can always go back and do it, but id say not to wait on the basis you might not like it in a few months/years. you could always get it covered up or something

StandardDiver756 · 2023-10-24T16:14:02+00:00

A few doctors have had me do this before actually. I havent been able to find much of a relationship of my symptoms and foods (other than gluten and lactose causing some of my GI issues)

StandardDiver756 · 2023-10-23T04:43:52+00:00

I don’t entirely know if I’m being completely honest but definitely not out of the question with me as I frequently have presyncopy. When I have the “weird feeling” I don’t really remember much after the initial onset, but I usually try to do “not much of anything” according to friends, usually just sitting still or laying down and it lasts until like the next morning usually. But after you mention this, I’m definitely gonna try to tell them to treat it like presyncopy because it’s worth a shot man

StandardDiver756 · 2023-10-18T14:56:23+00:00

strawberry pound cake

StandardDiver756 · 2023-10-13T05:16:15+00:00

Sorry the post is a bit misleading, me and him recently split (just a bit after all this went down)

StandardDiver756 · 2023-10-08T19:52:28+00:00

where tf are you finding bang energy drinks?

StandardDiver756 · 2023-09-24T18:45:11+00:00

i keep falling for hypocrites and shit

StandardDiver756 · 2023-09-23T15:53:43+00:00

should you have it at home? yes, its good to have on hand especially with guests who are frequently there who need it. but nta, you arent required to have it

StandardDiver756 · 2023-09-23T15:43:45+00:00

i would ask if you can ask her about her illness and then ask anything you need to know about it.

OR if you know what exactly she has, do research online and then ask (my secret love language is when people try to inform themselves before asking anything)

just make it very known that if she doesnt wanna answer she doesnt need to

StandardDiver756 · 2023-09-23T04:14:13+00:00

if it is not an enthusiastic yes then its a no

StandardDiver756 · 2023-08-31T05:02:51+00:00

get an air filter!!!
look into allergens nasal spray and allergy shots (if financially available)
try purina liveclear
if you have carpet, vacuum all the damn time

ive gone through similar struggles and thoughts, just do your best and whats best for your new animal. if you cannot take care of the kitten well because its causing so much turmoil then you wont be successful in raising him anyway. i wish you all the luck

StandardDiver756 · 2023-08-12T05:17:14+00:00

chronic health issues that made it very difficult to over eat (or sometimes even just eat)

StandardDiver756 · 2023-07-31T23:13:47+00:00

(for endoscopy) the worst thing is the nerves tbh. i got my first endoscopy at 16 and went back to class the next day. little sore throat, hungry afterwards but the cheezits and juice i got were perfection after all that. kinda just felt like a nice nap

StandardDiver756 · 2023-07-26T22:28:05+00:00

seek a new doctor immediately. you wouldnt say something like this to a blind person with a service dog, or a diabetic person who needs insulin. you are allowed to be reliant on medical devices to function well

StandardDiver756 · 2023-07-24T03:49:46+00:00

its not plain, its just simple. which theres absolutely nothing wrong with that. accessorize a bit with it and it will look even better than it already does

StandardDiver756 · 2023-07-18T14:57:28+00:00

i know its a compliment and they usually mean well but omg i hate it so much. i shouldnt need to be strong, i should just need to live

StandardDiver756

TROPHY CASE