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Ehlers Danlos Syndrome - Who is the best doctor to see?
Hello, my teenage daughter is being evaluated soon by cardiology, for possible EDS diagnosis. I believe the hypermobile kind of EDS. Who is the best doctor to see? Are there good doctors for this at the MN location? Thank you.
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Hello, my teenage daughter sees a cardiologist this week for an evaluation for EDS. I am anticipating a possible hypermobile EDS diagnosis. Can some advise me on which Mayo location is best for this condition? I am assuming there are great doctors to treat the condition in MN, which is closest for us. I just want to make sure she sees the best possible physician. Thank you.
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1 ReactionHi @lovemyfamily2003, welcome to Mayo Clinic Connect. I've merged your 2 messages into one thread that can be accessed from both the Bones, Joints & Muscles group and the Visiting Mayo Clinic group. I also added it to the Heart & Blood Health group. That way everyone will be brought together in one place.
Let me connect you with other EDS members and discussions that I think you'll find helpful. Members, like @lisafl @jthigpen @kariulrich @blossom2016, can share their experiences with EDS, some of whom are treated at Mayo Clinic MN or FL.
– Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
– Possible Ehlers-Danlos Syndrome with craniocervical instability https://connect.mayoclinic.org/discussion/possible-ehlers-danlos-syndrome-with-craniocervical-instability/
@katemschultz posted a similar message as you did when she was preparing for her first EDS visit to Mayo in Rochester
– What to expect at Mayo Clinic, Rochester https://connect.mayoclinic.org/discussion/what-to-expect-at-rochester
@lovemyfamily2003, I would be inclined to recommend the Mayo location closest to you. You can read more about EDS care at Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/care-at-mayo-clinic/mac-20362179 The Mayo advantage is that teams work together. Thus, regardless of location, your daughter will benefit from the shared expertise of all the specialists.
What symptoms does your daughter have that have led to you and her physicians suspecting Ehlers-Danlos syndrome?
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2 ReactionsHi! I cannot speak for the MN location, but Mayo Clinic in Jacksonville, Florida has an Ehlers-Danlos specialty clinic! They are WONDERFUL- I have never experienced such compassionate care; that says a lot considering I've seen loads of doctors over the years. The EDS specialist was able to see me over the summer, order tests and genetic panels, and confirm the diagnosis of Hypermobile Ehlers-Syndrome recently (the 22nd, actually haha). They coordinate care with other specialists at Mayo who are familiar with EDS (referrals are unique to the individual, which I love). I will be 23 this year and am so happy I took the leap and made an appointment- my insurance didn't need a referral, so I just called the Mayo scheduling line and asked for the EDS clinic (the doctor is Dr. Dacre Knight; he is an internal medicine doctor and only sees patients with EDS or possible EDS). If you see him, the initial appointment is pretty long- he goes over the international diagnostic criteria and asks many questions about patient and family history. It truly is wonderful.
A bit of a small history just for your info. As far as Ehlers-Danlos in general, I learned about EDS about 10 years ago and suspected I had it ever since I read the article. For as long as I can remember, I've had the joint and muscle involvement, fatigue/neuro involvement, skin elasticity, joint hyperextension, and severe digestive issues. None of my local doctors believed anything was wrong, and most primary doctors in rural areas aren't on the lookout for rare and/or genetic conditions. When I was 12, my doctors caught a serious kyphosis curvature (looking back, I'm not shocked due to the possible orthopedic manifestation of EDS). Since middle childhood, I had severe digestive issues (mostly abdominal pain with eating and retractable chronic constipation). After many years of OTC laxatives, prescription motility aids, colonoscospies (which were always normal) and other tests/ imaging/scans, no GI I saw knew what to do with me and couldn't tell me why I had these issues. I ended up independently making an appointment with a colorectal surgeon in 2018 who performed a temporary ileostomy- best thing ever and it was the best I could do at the time. About 6 months after that, I had my colon removed by another surgeon, and 9 months later (this past February), my ileostomy was made permanent by a different surgeon. They just passed me along when they didn't know what to tell me or what to do. I let surgeons do these surgeries and remove a major organ (funny looking back at it) when all they could tell me was "your colon just doesn't move quickly and nothing else is wrong;" no one ever looked into the root cause. After getting frustrated with the lack of medical support, and remembering what I read about EDS, I called Mayo on a whim and made an appointment with Dr. Knight at the EDS clinic. He is so knowledgeable and will ensure you are educated on how EDS affects the body; the whole clinic will affirm your symptoms and will always look into your concerns. Nothing is brushed off. I finally have a diagnosis of Hypermobile Ehlers-Danlos and know that everything I've experienced since childhood is connected! I don't think I would be where I am today without the EDS clinic at Mayo!
I mention all this to say that EDS is worth looking into, especially from a specialist. Each situation is different, but I had a very hard time finding doctors who would advocate for me; not even a rheumatologist was curious about why I had multi-system involvement. Mayo Clinic is your best bet- if you do travel to jacksonville, there are hotels on the campus and accommodations nearby are affordable; some have partnerships with Mayo Jax. I apologize for this long-winded post, but I think the story is a great example of Mayo vs. other medical groups and the compassion received. I wish you the best with your daughter and please feel free to message me if you have any questions about Mayo Clinic or EDS in general (I know everyone experiences EDS in different ways, but i know sometimes it's nice to talk with someone who "gets it") 🙂
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11 ReactionsThank 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.
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!
@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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1 ReactionI can attest and say that I have too attended the Jacksonville EDS Clinic and while I am still awaiting a second confirmatory DNA testing for V-EDS, that just knowing this place exists gave me comfort. I had no idea that EDS existed before the neurologist noticed I was hypermobile.
However, you only get 3 appointments at this EDS clinic and I think that it's really important to understand that, which left me with a concern that I will not be able to find a local doctor to help me when I am finished at Mayo Clinic, but they insist that I will have all the tools I need for success.
I find it difficult to communicate with the EDS clinic as it's by the portal and the doctor wants to wait until our appointments to go over any changes in symptoms or things I forgot to mention. 6 weeks later I won't remember any of it anyway so I've been trying to send updates when I feel different so they can see what's going on, but I wish I could talk to someone instead of having to wait 6 weeks in between my appointments. For example, I was walking very slowly in my yard the other day but my pulse was over 164, for no reason. Autonomic Dysfunction (POTS) is a common issue with EDS and I wanted to show that I have some documentation of it so I can get referred to the Dysautonomia Reflex Testing.
I do know they will refer you out to different doctors who are familiar with EDS while at Mayo to properly route your care and get you fully diagnosed and treated. Like Physical Therapy, Occupational Therapy, Cardiology, Specialized Neurologist for POTS, etc.
While Mayo is great for this diagnostic process, I did have an issue where I saw a rheumatologist 2 days after the EDS clinic and they ignored the EDS symptoms and called it fibromyalgia and said I would benefit from the Fibro Pain Clinic but I feel like, once again, I am being shoved off because of overlapping symptoms and it's not centralized pain where it's something I can control in my head. It is literally due to the laxity in my joints and my muscles barely able to hold my body up.. but what do we as the patients know? That is the part that bothers me about going to a specialty hospital and still hearing similar things as I do out locally.
I want to trust this process. It's just hard when one has been shoved off by more specialists than can count on fingers and toes combined. I will update when I have my 2nd appt with the EDS clinic and hopefully with a more in-depth and clear experience and understanding.
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2 Reactions@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?
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.
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1 ReactionI 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.
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