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Hi I love this site! I appreciate you sharing all of your knowledge with us all! I have a few questions. I’m new here, (well I just barely registered) & although I’ve been browsing around here on your site for a long time now, I’ve never posted anything :). I’m trying to reply to a discussion question you asked but I’m not sure how to do it. I don’t know if I’m missing something & can’t see the reply button because I’m using an iPad or maybe it won’t let me because the discussion is closed…..? Im trying to post to the question you asked “Who has neck pain at the bottom back of their heads that radiates down to their shoulders?” That’s been one of my main complaints I’ve had for years & I’ve had lots of tests & scans done for it & they found a few issues but never been tested for eds…at least not yet, bunt I hope to get tested for it soon. I’ve mentioned to my Dr that my mom & I think we have Eds but he said he’s never heard of it & then kind of dismissed it & said I just have osteoarthritis. My mom, my two brothers & I have so many of the symptoms of eds that it seems obvious to us that we have it but none of us have been able to get tested yet. My brothers & I live in Ogden Utah & my Mom lives in Spokane Wa. I’ve searched a lot online & haven’t been able to find any specialists that are even remotely close to our locations. The closest one I could find is in Seattle but we don’t have the money to travel there. I’m going to bring it up to my Dr again in a few days at my next appt on the 9th. I hope maybe he’ll know more about it now or can refer me to a Dr who may know more about eds? He has referred me to an Orthopedic surgeon, which I see on the 24th for my neck & pain issues so maybe my. Dr may just say to bring it up at the appt, we’ll see. I’ve been going through the process of getting on disability for 2 years now due to a very painful sclerotic lesion off the tip of my Dens of 2nd cervical vertebrae & for severe depression (along with many other issues which I feel are related to eds) complicated by Hi I love this site! I appreciate you sharing all of your knowledge with us all! I have a few questions for you, I hope you don’t mind me pming you! I’m new here, well I just barely registered but I’ve been browsing around here on your site for a long time 🙂 Anyhow, I’m trying to reply to a discussion question you asked & I don’t know if it won’t let me because the discussion is closed or if it’s because I’m using an iPad or for some other reason? Its the one where you asked “Who has neck pain at the bottom back of their heads that radiates down to their shoulders?” That’s been one of my main complaints I’ve had for years & I’ve had lots of tests & scans done for it but never been tested for eds…yet ;). I’ve mentioned to my Dr that my mom & I think we have Eds but he didn’t seem to have a clue about it & kind of dismissed it. My mom, my two brothers & I have so many of the symptoms of eds that it seems obvious to us that we have it but my brothers & I live in Ogden Utah & mom lives in Spokane Wa & we’ve not bee able to find any specialists that are even remotely close to our locations. The closest one I could find is in Seattle but we don’t have the money to travel there. I’m going to bring it up to my Dr again in a few days at my next appt & I hope he can help us get tot he bottom of it or maybe send me to a Dr who may know more about eds. I’ve been going through the process of getting on disability for 2 years now due to a very painful sclerotic lesion off the tip of my Dens of 2nd cervical vertebrae & severe depression, ocd & some other issues many of which I feel are related to eds. On top of those issues I have ptsd from my ex husbands abuse which is why I’ve got the lesion in my neck & had a few emergency surgeries & witnessed a bunch of different traumas & near death experiences with my parents & nephew so those experiences have contributed to the ptsd. Any how sorry to go on & on lol. I’m just wondering about how to post on here & also wondering if you know of any doctors who are familiar with eds in Utah? Thank you for your time & I hope you’re having a wonderful day!
Hi Pixielace!
Mog the Dog here. Welcome!
The thread you wanted to reply to is closed, so you need to open up a new thread to continue the discussion.
It sounds like you need a new doctor who knows something about EDS. I would recommend against trying to convince your current doctor to try to diagnose you. When a doctor dismisses EDS as no big deal, it’s time to find a new doctor.
Best wishes in your endeavors to get a viable treatment for your current symptoms. You are doing well to educate yourself and be your own best advocate.
MTD
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