I am looking for a new primary doc in Walworth county or the surrounding area
May I ask where/who you saw for your genetics testing?
I saw Dr Wargowski at UW. I had a carotid dissection in 2014, they also discovered I have carotid artery tortuosity and my neurologist sent me to genetics to rule out vascular type, Loeys deitz, and Marfan. They did a panel on me and tested something like 10 genes and were surprised to find a "likely pathogenic" mutation on my COL5A1 instead of something else. It took 7 months to get in to see them but it was worth the wait. My diagnosis explains soooo much of my health history.
Xxxxxxx Yzzzzzz thank you for sharing. I am looking to get testing done. I had a lumbar epidural steroid injection last year and ended up with a spinal csf leak that wouldn't heal. It's been a horrendous year, but anyway I learned that there is a connection between EDS and leaks or weak dura, so I'm curious whether I have or not. I have had relatively minor I suppose issues other than this, but reading others stories it seems many of my weird symptoms I've had over the years would be explained. I'd love to know if you find a good PCP around here. I'm currently searching as well. I'm not happy at all with the care I've been receiving, doesn't help that they misdiagnosed my leak for several months and told me I was depressed!!
Xxxxxxx Yzzzzzz Are you local to me? I would love to swap doctor info with you if you are. My current PCP was ok but I think he's written me off because I don't want to jump to drugs. I feel like my symptoms aren't too severe yet, if I can take good care of myself maybe I can postpone the downhill slide a few more years. What I really want is monitoring, nutritional support, and guidance. I just turned 40, I've had minor symptoms for about 25 years, about 20 years ago I went to see an internist and he said it was all in my head which I *KNEW* wasn't true. I pretty much stopped going to the doctor after that because I was totally disillusioned. After my carotid dissection I need to be monitored yearly, according to Dr. Wargowski.
Xxxxxxx Yzzzzzz who did you see for your leak? I've recently had the opportunity to meet Dr Heffez, at the Wisconsin Chiari Center and he seems very competent. In November he did a decompression surgery on my sister and followed it up with a tethered cord release last week but I know he deals with CSF leaks too. He is the one who officially diagnosed my sister with EDS.
Xxxxxxx Yzzzzzz I will PM you, if that's ok? maybe tomorrow, having bad head pain today
Xxxxxxx Yzzzzzz Any time! I am close by you in downtown Elkhorn.