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1823499 tn?1370090289

new to eds........

my nl is pretty sure that i have eds type 3. im seeing a rheumatologist this mon and if he confirms it than i will be refrerred to a geneticist. any suggestions for my appt mon on what exactly to say to the rheumatologist? i also have chiari and autonomic dysfunction. thanks, Dana
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620923 tn?1452915648

  Hi Dana..sorry I missed ur post....Mel gave u some good tips...the video's at the top of this form is filled with helpful info....

I hope u look at the video's by Dr Driscoll....she also has EDS so I really think  she understands how this affects us and can offer the info and insight u may need.
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1903798 tn?1333905288
Dana study the web and be prepared to state why you feel you have EDS.  Even though rheumatologist treats EDS they don't all know what it is.  A good rheum Dr. will check you thoroughly and you need to tell them when you feel any pain.  I last time asked about something when we were done and he said your pain level was not bad at that location.  I said no that location hurts me more than any you did not ask and I can tolerate a lot of pain.  When they are pushing on your trigger points they need to know any discomfort.  I recently have went back to my rhuematologist  and feel like treatment is helping yet EDS is tough to get diagnosed and tough to get treated.   I also have osteoarthritis from EDS and allover trigger point pain.  Good luck!
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