mkoven Posted January 6, 2009 Report Share Posted January 6, 2009 I know a number of folks here have eds. I haven't been able to get on ednf.org in weeks. Anyone know what's going on? Quote Link to comment Share on other sites More sharing options...
flop Posted January 7, 2009 Report Share Posted January 7, 2009 I've just tried and been able to login without any problems. What sort of problem are you having with the site? Does clicking the "refresh" button in your web browser help (clears the cache of that page)?Flop Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 7, 2009 Report Share Posted January 7, 2009 Hi mkoven--- I was just able to get in there with no problems. I know changes have been made in the message forum--- .They have had some issues with the site, but do not know any details.I have gotten frustrated with the site on and off. Once when my year was up after paid membership I was denied access to the site. Then I sent more money and joined again---------BUT there is free access, but I wanted to donate anyway. I have gotten the news letters, MRGs, DRGs, medical card ect. EDNF needs the money.Maybe you can contact one of the moderators.Maxine :0) Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 7, 2009 Author Report Share Posted January 7, 2009 I can't even pull up the site-- it times out. Maybe I need to use a different browser? Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 7, 2009 Author Report Share Posted January 7, 2009 I 've now tried firefox and explorer--no go! I don't have problems otherwise. Could either of you paste in the email or phone number of someone from the ednf or the site? I'm having eds-related neck issues and wanted to look back at info on cranial settling. Thanks!!!Michele Quote Link to comment Share on other sites More sharing options...
jjb Posted January 7, 2009 Report Share Posted January 7, 2009 I'm having eds-related neck issues and wanted to look back at info on cranial settling. Thanks!!!MicheleHave you been tested for chiari? Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 7, 2009 Author Report Share Posted January 7, 2009 No chiari on regular mri. Just saw a neurologist who is going to do a mri/mra of my neck to see where the nerve that goes to my tongue is getting pinched. But she doesn't seem to know too much about eds, so I wanted to get on the site. Quote Link to comment Share on other sites More sharing options...
jjb Posted January 8, 2009 Report Share Posted January 8, 2009 No chiari on regular mri. Just saw a neurologist who is going to do a mri/mra of my neck to see where the nerve that goes to my tongue is getting pinched. But she doesn't seem to know too much about eds, so I wanted to get on the site.Have you visited the chiari institute site? They have info re both chiari & EDS.They also have the article that was published in 07 by the institute, Dr Francamono & Dr Nazli (both leading authorities on EDS).It described in the article that chiari in EDSers does not always show up on a regular MRI.Here is a link to the article:Chiari & Connective Tissue Disordersand here is an article to help understand the original articleUnderstanding the abstractI think MRI should be done while EDS pt is upright. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 8, 2009 Report Share Posted January 8, 2009 Michele, I go to the general EDNF site at http://www.ednf.org/then you can try logging in--does that work? My guess is that they've changed servers. Be sure that you've emptied your cache and cookie files as those may be part of why you're struggling with logging in.Nina Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 8, 2009 Author Report Share Posted January 8, 2009 I can't even load the site. It just times out. I'll look at my cookies/caches. In the meantime, would one of you be able to get on the site and find a phone number for me of who to contact and then paste it in?thanks!Michele Quote Link to comment Share on other sites More sharing options...
flop Posted January 10, 2009 Report Share Posted January 10, 2009 The contacts page gives this e-mail address but as the site is working okay for others it sounds like it is an issue with things at your end so I'm not sure that EDNF will be able to help you.Have you tried clicking the "refresh" (Internet Explorer) or "Reload current page" (Firefox) buttons? (don't just click the "try again" in the error screen). Can you use a friend/relatives computer to see if you can get on the site from there?Flop Quote Link to comment Share on other sites More sharing options...
BelieverEM Posted April 12, 2009 Report Share Posted April 12, 2009 jjb, THANK YOU for the link to those articles! I've never read the full article.Erin Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.