Clavicle

Hi clavicle,

Have you had an upright MRI? It shows different issues than one that is conducted supine. Interestingly, due to my own issues, I was researching lateral medullary syndrome last night. It might be worth it for you to Google that and see if you feel it warrants a conversation with your docs. I am off to a neurosurgeon several months from now because of changes in my upright MRI from last year to this year. My geneticist suspects this syndrome as I have a disc compressing my spinal cord in my neck which only shows up in the upright MRI.

hi zebra, no i have not had one but ive heard theyre useful in eds! was it hard to get? im in atlanta and nobody even knows about eds here. do you feel a difference between supine and upright? i will have to google "lateral medullary syndrome". ive read about chiari and how it can make your hands numb, which freaked me out. but i also read that people who have it/or disc compression (?) cannot do the valsalva maneuver without exacerbating their sx. do you know if this is true? when i do the valsalva it makes my ears pop, feels good because they're always clogged up..i guess from tmj.

i went to an emory neuro, fwiw. he wasn't helpful at all. maybe after vanderbilt ill try a new neuro who does upright mris.

my left side of my neck vertebrae/first rib/collar bone/sternum crack a lot. it doesn't hurt but its odd.

Welcome to the forums clavicle! Could it be that your problems are caused by standing still too long? If so, that is a typical POTS/dysautonomia thing. Hope this helps!

yup, when im standing still i feel like im going to faint/an idiot but my neck/jaw doesn't bother me that much. SITTING still my neck and jaw kill me. at home i never sit for more than 15 minutes because my muscles all start to feel "heavy". at work (part time), the pain in my neck/jaw is so bad i have to put on a neck brace. i have water on me at all times and salt too, because there was a point where i drank so much water that i flushed out all my electrolytes, lol

last week i walked around a mall for 2 hrs and i was pretty okay because i was walking fast, walking with the dogs outside im okay, but if i go to the grocery store i have horrible episode every time without fail. in the morning i have to walk up stairs to get to my office and its rough. my hr is 140-150. DONT TALK TO ME.

my dys flares up the worst when im grocery shopping for some reason, is that common?

no! ive been to 2 neuros and they did not rec a brain mri. i assume you mean for MS?

in 2010 i had an episode with "shooting pains" up and down both my arms, that's when they both went numb.. it is surprising all my tests came back normal.

ncv=nerve conduction velocity, they measure nerve signals (median/ulnar for me) to your fingers

hello, i am new with hypermobile eds.......

i have a longer intro post i am working on but i have quick questions!

my neuro is referring me to vanderbilt at my request. my current sx are mysterious paresthesia/fatigue in all my fingers (since 2010), tingling, horrible jaw pain, neck pain, heavy limbs, cognitive problems, dizziness, nausea, choking, trouble breathing, palpitations, extreme car sickness

i'm new to testing, haven't even had a basic tilt table test. are there any specific tests the autonomic center could run for my paresthesias? so far ive had emg/ncv/cervical mri/thyroid/b vitamins all "normal"

would small fiber neuropathy cause finger fatigue or is that large fiber? my neuro would not "put me through" a test for it, not sure why.......

thank you!