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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
Hi! 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") 🙂
Replies to "Hi! I cannot speak for the MN location, but Mayo Clinic in Jacksonville, Florida has an..."
I 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.
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.
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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.