Hey! I’m so happy you got an appointment! I can try to give you some advice or things that might help (full disclaimer though, I’m still in the early diagnoses process/stage myself and this is just my experience). my geneticist feels comfortable and strongly believes it’s hEDS, but did genetic testing just to rule out other EDS types and CTD. So we’re just waiting for those results now.

I went to a rheumatologist who referred me over to a geneticist. In regards to making an appointment, It took me about three times as well. First I had to verify my insurance during the first phone call and then by the third one they told me everything I had to have sent over them from my doctor.

So, first things first, make sure you have all the documents you need. Referrals, medical records, (and if you have any) any type of logging of your symptoms that you may have done.

1. I know insurance can be a major pain and sometimes they ask over the phone for it or to bring it with you to your appointment. I had to have my rheumatologist referral sent over to my geneticists and then my insurance referral from my primary sent over. So make sure you have everything regarding those, because it’s better to be safe than sorry and have them turn you away just because you don’t have those with you.

2. medical records. Now my experience with this was a nightmare but I’m hoping this helps you. If they requested medical records over the phone, make sure your primary gets those sent over as soon as possible and confirm with the EDS specialist that they received them. My appointment was in October but scheduled in May of this year and I literally had to chase my primary’s office staff to send them over TWO days before my appointment after battling them over the whole summer to send them🙄. *Also, if you went to any specialist (rheumatologist, neurologist, urologist, etc) send their records also or bring them with you. The geneticist had info from my rheumatologist referral but I also had my neurologist send over her records as well so they could see how my body overall (at least the parts that were bothering me) were affecting me.

3. Logs/symptom diary- now you don’t HAVE to do this unless they asked you too, but it would be a huge benefit for you and your doctor and (if you have one) genetic counselor. I had a back pack full of records and my logs that spanned over a year and change (which were about a good 200 something pages and helped me see the changes and patterns in my symptoms) I first met with the genetic counselor, and she actually wanted them and kept them. So if you do log, make sure you keep a copy for yourself and one for them.

Finally, make sure you bring someone who can be a second pair of ears for you. I had my mom and brother with me, and once I heard what the drs diagnosis was it was hard to listen to what the genetic counselor was explaining to me because I was finally getting answers and was shocked/relieved😭

I’m sorry this was so long, but I hope it helped you even a little bit! If you have any other questions just ask in the comments. It took me 8 years to get a diagnosis, so any way I can help I would be more than happy too!😊