It's Nothing Personal

General
1

I got an official diagnosis of Ehler Danlos Syndrome-hypermobility after taking our youngest daughter to a geneticist. I will see a geneticist for myself on 1/5/15. I told my NL about it and she told me that the EDS contributes to my myofacial pain and possibly to my intractable migraines and that it will possibly slow the healing process after surgery. I love a doctor that can connect the dots.

Now I told the NS that is supposed to the surgery the same day I told the NL and I have not heard back from him yet. I specifically asked him, would he hace to revise his surgical methods to compensate for the EDS, would I have to be fused, would I develop CCI? I have not heard a peep from him yet? I realize that he may have had surgeries and such. I liked his personality and it's nothing personal, but I have very important questions that are not being answered, so I just requested another appointment with another NS. I specifically told the new NS that I have EDS and I am concerned about having CCI, so he knows exactly what to look for. I will be seeing Dr. Mark Luciano at Cleveland Clinic.

I saw a my pulmonary doctor on 12/11 and he thought the pain I been feeling when I'm trying to breath is asthma. I disagree. We got three babies with asthma and one with reactive airway disease. But anyway he referred me to sleep medicine to see if I got sleep apnea on 1/20/15. I start water therapy on 1/6/15.

I'm just happy doctors are finally figuring out that something isn't right.

Take care,

Nykki

2

Nykki, your right it’s nothing personal, you are taking care of yourself the way you should be. Glad you are getting disgnosed properly. I have EDS and get sharp chest pain time to time- it’s costochondritis. A joint where a rib connects to the sternum moves around and it feels like I’m having a heart attack and can’t breath for a minute.

Jenn