April 7, 2013 at 10:39 am #434
do you have to have eds i’m not sure i have that. my thumbs have always bent back to my wrists and i use to be able to walk on the sides of my ankles but arthritis is getting worse and becoming stiffer. dr once told me i was too double jointed to break anything. thanksApril 7, 2013 at 4:08 pm #3606MJParticipant
Do you have stretchy skin? Have you been tested for EDS? A lot of people have EDS, but are not officially diagnosed. My blood work actually came back negative for the genes, and my diagnosis was based on clinical presentation. Yes, you should start here and ask a lot of questions and share things about yourself (symptoms, etc). Hopefully we can help you get the bottom of everything 🙂
MJApril 7, 2013 at 4:24 pm #3607
thank 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 4:26 pm #3608
oh, no stretchy skin.April 7, 2013 at 6:04 pm #3613MJParticipant
Sounds like you’re doing all the right things. You should read the Driscoll theory part 2 and if you can watch Dr. Diana’s videos that would be great too. Just learn as much as you can; read as much as you can. Then you can post on the site any questions that you have and you can share your symptoms and get feedback from everyone. I am sure that Dr. Diana, when she checks into the site, will respond to some of your postings as well, and that is always great information!
Crying can be a good thing. It is a great release. So just hang in there – I think this is site will do wonders for you. I know it has for me. Sometimes I just come to the forum when I’m depressed. It makes me feel better 🙂
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