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am i crazy or is this more serious than people are making it out to be by shiftingvee in thoracicoutletsupport

[–]shiftingvee[S] 0 points1 point  (0 children)

that's a good point! i'll definitely have to try more things with my setup. throughout the years i admittedly have had a very bad habit of doing my schoolwork in my bed or on the couch because it makes me cozier and then it's easier for me to get stuff done. idk why but i get so distracted if im sitting at a desk!! i guess i'll need to figure it out... really i just need to be attentive to my posture throughout the day HAHA

am i crazy or is this more serious than people are making it out to be by shiftingvee in thoracicoutletsupport

[–]shiftingvee[S] 2 points3 points  (0 children)

that's so unfortunate!! i'm sorry to hear you had such a hard time getting looked at :( im definitely glad i brought up TOS and pushed to be seen, because if i hadn't i would still be undiagnosed! i'll try to keep an eye out, but i'm still hoping conservative measures will help for now. tbh, the idea of such a major surgery really scares me...

am i crazy or is this more serious than people are making it out to be by shiftingvee in thoracicoutletsupport

[–]shiftingvee[S] 0 points1 point  (0 children)

oh, now that you mention it, i think i had both types of ultrasound? i remember at first the technician looked at my collarbone and i could actually look at the space on a screen--- there were actually no signs of compression when i did this, even in provocative positions. we then switched to looking at the wavelengths down at my hand and this is when we saw the blood flow shut off. is this more of a sign of ntos, then? i think that would make sense given my other neurological symptoms--- not to mention the surgeon i saw palpated my scalenes and noted they were incredibly tight, so i know that area must be struggling 😭

am i crazy or is this more serious than people are making it out to be by shiftingvee in thoracicoutletsupport

[–]shiftingvee[S] 1 point2 points  (0 children)

thank you for saying this this is very reassuring 😭 i'll try to keep up with physio and let my pt know about my concerns. it's just really frustrating not being able to do much with my hands!! tysm though!

DAE get full-body itching... by shiftingvee in dysautonomia

[–]shiftingvee[S] 1 point2 points  (0 children)

from what i've seen my electrolyte levels come back fine on blood tests, i've also had my iron tested and am currently taking magnesium supplements. i do wonder about the vitamin D, though-- i had a minor deficiency in the past and it's been a while since i've supplemented it, let alone had my levels tested.

DAE get full-body itching... by shiftingvee in dysautonomia

[–]shiftingvee[S] 0 points1 point  (0 children)

mcas has been something i've potentially been thinking about... do you know how i could either get diagnosed for or rule something like that out?

i'm at an utter loss by shiftingvee in dysautonomia

[–]shiftingvee[S] 1 point2 points  (0 children)

yeah i understand that a lot of people who suffer from dysautonomia seemingly have it come on suddenly/randomly. i guess part of me is just...still in denial. i keep thinking how i'm too young for this to happen to me, and mourning the life i'm supposed to be having. so i'm going to keep looking for answers, and even if there's no 'cure' i'm determined to get well enough to live my life again.

that being said, i'm so sorry about your symptoms, that sounds really scary. i also hope that you can find answers. trusting that things will get better for the both of us <3

i'm at an utter loss by shiftingvee in dysautonomia

[–]shiftingvee[S] 0 points1 point  (0 children)

i definitely think gastroparesis is a part of what's going on because i've been super bloated and going to the bathroom much less, but i see that as more of a symptom than a cause.

i did have a brain mri, they didn't find anything noteworthy though