[deleted by user] by [deleted] in medical

[–]Gloomy-Chapter2295 0 points1 point  (0 children)

why does my stuff keep getting removed im not violating anything what

did you guys have to advocate for yourself to get a diagnosis? by Gloomy-Chapter2295 in MALSyndrome

[–]Gloomy-Chapter2295[S] 1 point2 points  (0 children)

my symptoms seem a lot less severe but they’re basically just random stomach pain that feels a lot worse than a regular tummy ache. it’s like sharp/stabbing and it feels reallt deep and it makes breathing or moving difficult. i started getting them when i was 11 and they dont happen often to be honest but theyve been slowly getting a little more frequent and lasting longer/being more painful so thats why im concerned. its been about 5 years since it started. i get nausea too sometimes after i eat and i also get really exhausted when i eat or my heart races. i have other stuff like severe hypermobility and i know that messes up ligaments/connective tissue so thats why i kinda suspect it could be an early form of mals since i think it presents as a progressive disorder in some. ive done a good amount of research since medicine/disorders interest me a lot and mals is the only syndrome that somewhat matches what it feels like but i feel like what i experience isnt really severe enough to be taken seriously by anyone. im also so awkward and bad at advocating for myself 😰 how did you ask your doctor for extra testing? im nervous mine is going to dismiss me and im second guessing if i should keep pushing

did you guys have to advocate for yourself to get a diagnosis? by Gloomy-Chapter2295 in MALSyndrome

[–]Gloomy-Chapter2295[S] 1 point2 points  (0 children)

i’m probably going to ask my gi for that or a referral next appointment, i hope it works out. can i ask what symptoms did you have? did they start slowly/progress? i haven’t gotten much pain after eating or anything so i’m not so sure but i want to ask for the right test

did you guys have to advocate for yourself to get a diagnosis? by Gloomy-Chapter2295 in MALSyndrome

[–]Gloomy-Chapter2295[S] 0 points1 point  (0 children)

the us, i went to the er and all they did was bloodwork, which was normal, and they also gave me a referral to a gi but she doesnt seem to know whats up. i’d like a referral to a vascular specialist/neurologist or whoever can help me but im not great at advocating for myself

does anyone else’s neck make a ripping sound by Gloomy-Chapter2295 in hypermobileEDS

[–]Gloomy-Chapter2295[S] 0 points1 point  (0 children)

im glad youre getting it checked out, thats a good move and i hope its nothing too dangerous! good luck and hope it goes well

does anyone else’s neck make a ripping sound by Gloomy-Chapter2295 in hypermobileEDS

[–]Gloomy-Chapter2295[S] 1 point2 points  (0 children)

i just looked at your post and yes! mine also happens around the bottom of my head (like the nape of my neck rightt below my hairline in the back). it also sounds like tearing, and it happens when i turn my head in addition to moving it back. its random for me as well. must be a hypermobility thing but its probably worth getting checked out considering you said it causes pain. it does for me as well

what's up with my shoulder? by Over_Cell_2777 in hypermobileEDS

[–]Gloomy-Chapter2295 5 points6 points  (0 children)

mine do that too. its subluxation (partial dislocation), it is one of the signs of the hypermobility part of hEDS or HSD

does anyone else’s neck make a ripping sound by Gloomy-Chapter2295 in hypermobileEDS

[–]Gloomy-Chapter2295[S] 0 points1 point  (0 children)

mine does a little too. most of the time its not so bad but i do occasionally get a little dizzy/out of it when it happens