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dab78Participant
thank you for the reply, i had a really bad night with pain, i just want to cry. might start and never stop. i’ve been going though this my whole life but got really bad 22 yrs ago. are you hypermobile? i’ve always been able to do crazy things with my body like walking on the sides of my feet (on the sides of my ankles) no pain with that. in the beighton scale i would say i’m a 5 b/c i can’t tell if my knees or elbows bend back. also i am 53 with bad arthritis so i’m not as flexible as i once was. i just had partial rotator cuff surgery b/c i’ve dislocated my shoulder so many times i had to fix it. i can turn over in bed and my shoulder almost touches my neck but goes right back were it’s suppose to be. does that sound like hyper eds? thanks
dab78Participantdid you have an iv? i’m going to the cleveland clinic. on the dinet.org website dr david martin is recommended @ the clinic. anyone with any ideas? i’m just really upset 90% of what is on this site is me. i also have an appointment with a genetics for hypermoblelity eds.
dab78Participanthi please help me. i was told in 1994 i had pots but no treatment was available. yesterday my neurologist called and said the tilt table was negative, i asked why in the 90’s it was positive but now is negative, and when i wear a heart monitor my heart rate goes over 200 just going up steps. she said she did a tilt table for nerve response not a cardiac tilt table with an iv etc. has anyone ever heard of 2 different tilt tables??
April 8, 2013 at 8:11 am in reply to: hi not to good at this yet i need help mg? pots, neuromyotonia, small fiber neuropathy etc #3616dab78Participantshould i start myself on zyrtex before i go for tilt table and qsart? eveytime i watch i new video i find more amazing info. my muscle cramps, fastulations, twitching are so bad i will try magnesium too. i just need to if anything will affect testing. thanks
April 8, 2013 at 7:16 am in reply to: hi not to good at this yet i need help mg? pots, neuromyotonia, small fiber neuropathy etc #3615dab78Participantgood morning, is this the reason i feel ok one minute and rotten the next. i can be sitting, standing, lying down or doing something. i can feel like i’m moving when i’m not?
dab78Participanthi could you tell me what ME is. i have been told i have everything you have, i’m not dyslexic
my daughter is though. my dr does not believe in TMJ, fibromyagia, chronic fatigue. he makes me mad sometimes but other times he’s great. i’m so tired i can’t talk or think. thanks for listening.dab78Participantoh, no stretchy skin.
dab78Participantthank you, i just want to cry. i’ve been reading all day and there are some many things that happen to me that i didn’t know wasn’t normal. i just read about elevators and have had the same thing happen or when i’m on them everything is moving-spinning. if i stay in a hotel room to many rooms up i can even feel the building moving? i had never heard of EDS or chiari before, where do i start? my kids and i have extremely large heads, my kids all have signs of the same problems that i have, just not as bad yet. thank you, please let me know what i should be doing next. i am going to the cleveland clinic neurology, have had test done for mg, neuromyotonia, autonomic testing in july,emg, muscle biopsy, blood test but no results.
April 7, 2013 at 9:52 am in reply to: numbness in left arm, weird thing…in my tongue, often in my left leg #3601dab78Participanthi i just found you guys yesterday and am not real sure what to do next. would like to put my problems out there but don’t know where to start. thanks
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