Ehlers Danlos Syndrome - Who is the best doctor to see?

@healthhopefreedom You mentioned that you forget your questions and any changes in symptoms by the time you seek your provider. Have you ever considered a journal/note-taking during the 6 weeks between appointments?

@healthhopefreedom @erikas Since HHF is already on the Portal, why not use it to document the added symptoms and the questions that come up between appointments?

Yes! I just got it in the mail today, actually. I do write them down but I end up forgetting to open the notebook at the appointment. My appointments (I’ve probably had 20-30 in the last 4 months) are overwhelming me. So I have organized all of my 15+ Years of medical records into a binder with tabs for each bodily system but that seems to prove inefficient for transport and discussing everything with doctors because it’s just so much. So I ordered a journal this week and already completed day 1. I also screenshot some of the things I typed in the forum about my symptoms and told my doctors as well. They thanked me.

I want to thank you so much for posting this and sharing the details. It seems like we have similar stories. My daughter was been diagnosed with EDS about 4 months ago. We just had an appointment with a cardiologist last week and suggested Mayo in FL. She's been suffering with the severe digestive issues since March of this year She's had numerous scans and tests with a diagnosis of rumination syndrome. However since that diagnosis all of her symptoms have worsened. The stomach issues are more severe, there's pain with eating, constant vomiting, headaches, nausea, joint pain and the list goes on. Throughout our constant reaserch, we've discovered there is no pain with rumination, but the Dr. is insistent on going with the original diagnosis... SMH Seems to me like the doctors have ran out of pages in their books and don't know what else to do to help her. They've prescribe multiple meds, However none of them have helped with any of her symptoms of constant vomiting, nasuea and headaches etc. They're looking to treat the symptoms and not the cause. It's very frustrating to see her go through this for this long with no plan to get this issue under control. I plan to reach out to the doctors at Mayo and hopefully they will be able to help. Thank you again for sharing your story.

@healthhopefreedom You are extremely organized and it sounds like you have a lot of information to present to a provider.

May I ask if you receive care in the same location and if providers are able to access all of your notes easily in one system and if you are at a hospital system that is known to communicate across departments?

Referral for Ehlers Danlos Syndrome

I am looking to see if anyone in the Rochester or even Eau Claire area Mayo can recommend someone to see regarding EDS. I do see there is an Geneticist that does has done some research on EDS, however I am finding not the best reviews. I am willing to see anyone that has any experience with EDS in any department.

It has been years and being told for years that they cannot find any reasons for my joint pain, chronic fatigue, dislocating and hypermobile joints, chronic headaches and migraines, POTs/dysautonomia and most recently cervical instability. I really do not want to make the trip to Rochester, just to be dismissed without being listened to. I live near Eau Claire. I actually work for Mayo in Menomonie, WI and occasionally other clinics as well. (I can obviously get a referral from my PCP).