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Ehlers Danlos Syndrome - Who is the best doctor to see?
Bones, Joints & Muscles | Last Active: Jun 14, 2023 | Replies (44)Comment receiving replies
Thank you so much for your reply. I’m sorry that you had to go through so much before your diagnosis. I wish we could go to Florida, but right now we have an upcoming appointment in Minnesota which I think will be a good start for us. My daughter also does have problems with digestion although I don’t really know the connection yet I should read more about that part. I suppose they just treated as they would any constipation? I can relate to your Frustration with the doctors prior to diagnosis. Our children’s doctor simply looked at us and told us that he she thought that my daughter had a low pain threshold. I immediately stopped going to her. I began taking her to children’s hospital and it was only when I was seeing a physical therapist myself and was asking her about it that she brought up the EDS diagnosis. Honestly I’m not even sure children’s would have caught it because they haven’t so far and we’re sending us at that point to the pain clinic to be treated for pain. I wish more doctors were educated about this condition.
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@lovemyfamily2003, I'm confident that you are in good hands at Mayo Clinic Minnesota. In addition to having experts in EDS, you'll have the benefit of the pediatric specialists at the Children's Center. To add to my confidence in Mayo is that fact that all the providers work together and can draw on the expertise of their colleagues. Your daughter's team has access to more than 4,700 Mayo Clinic physicians and scientists on three campuses. If there's a question, alternate ideas and emerging research are just a phone call — or hallway — away.
When do you head to Rochester?
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Of course- I am sorry for it being months later, though! I'm happy you have an appointment in MN- it is a GREAT start! I'm not sure if they have a clinic there, but I know they have EDS-knowledgeable doctors!
I found this profile of an internal medicine doctor in the genomics department at Mayo MN: https://www.mayoclinic.org/biographies/deyle-david-r-m-d/bio-20055634
The whole Ehlers-Danlos Society website is full of resource materials and has been so helpful to me; here is a link to information on EDS and GI involvement: https://www.ehlers-danlos.com/2017-eds-classification-non-experts/gastrointestinal-involvement-ehlers-danlos-syndromes/
But yes, they just followed the typical treatment protocol for constipation, but later did tests for motility. Slow transit is common with EDS. Physical therapy is normally very insightful about EDS, so I'm happy she thought of it!