Hi Rebecca,
Hey 6 months isn’t bad to get a diagnosis (only kidding, I know you’ve been suffering much longer!) but I know you were considering EDS, when you posted back in March. I think what the Mild EDS might mean, is that you haven’t got blatant signs. I am one of those people too. I don’t have stretchy skin, I don’t have hypermobile joints, or dislocations/subluxations – but there is an underlying fault to my collagen production, it would seem and somethings causing me a lot of problems.It would be good if the geneticist could shine some light on your particular cause (though half of the time, they only check to rule out EDS IV)
Regards
Barbara
(UK)
It has felt like forever to get the diagnosis. I have loose ankles, foot bones and small joint laxity in fingers, but nothing server. I have shoulder and wrist subluxation occasionally. I have another CT angiogram, 6 month check up, coming up for my “small” descending arch thoracic aneurysm. I can live with the small joint issues; it is the family history of 4 female relatives who have died from brain aneurysm that worries me too. My aneurysm is not in my brain, but if there is a collagen issue I would like to know especially if it is type IV. I was pleasantly surprised when the rheumatologist looked online to see if there was a connection between EDS and Eagles while I was in his office. It would have taken too long to wade through the information so I think he was going to follow up later.
I was told it could take a year to see the geneticist.
I had surgery for my right side Eagles Syndrome, and have done very well since surgery, for which I am grateful. That bone was compressing my carotid and giving me all kinds of nasty symptoms. The left side is longer than the right, but it is angled differently and not bothering me as much as the right side was. I will wait to see if the symptoms subside more before I have the left side done. I will keep you posted.
I hope you are doing well and that your symptoms are few.
Rebecca