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

Posted by lovemyfamily2003 @lovemyfamily2003, Aug 26, 2020

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.

@dandl48

@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?

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Yes @dandl48 i have done this. I also bought a symptom journal which has proven to help me this week as I contracted Covid.

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@healthhopefreedom

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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@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?

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@needrelief

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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@needrelief Welcome to Mayo Clinic Connect, a place to give and get support. You are looking for answers and treatment for your daughter's debilitating symptoms.

Below I have linked the Digestive Health group along with a discussion in that group related to rumination syndrome. You may wish to scroll through the past discussion and look for previous suggestions and connect with any members that are still active.

– Digestive Health https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/
– Would like to talk to other people with rumination syndrome ://connect.mayoclinic.org/discussion/would-like-to-talk-to-other-people-with-rumination-syndrome/

May I ask what other diagnoses you are considering so I can connect you with those groups, discussions, and members?

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@erikas

@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?

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The only location I’m willing to go is Mayo Clinic because they all have access and work together for my care. Cant get that anywhere else. I spent 15 years wasting my time trying locally. I live an hour and a half away from My Mayo.

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I feel the same as you. I have been working with cardiology for 3 years and am very happy with the team. If Mayo can't find it; you don't have it!

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I have been working with cardiology for 3 years. I have 22 doctors on my team. They are all terrific! Your daughter will probably not see just one cardiologist. I don't think it would be appropriate for me to give the name of the one I think is best. They all are!!

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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).

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@csalter

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).

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@csalter Welcome to Mayo Clinic Connect.

Of course you want to find the best provider possible.

You'll notice that I moved your question to an existing discussion. I did this so you could connect with members like @rois4richo @healthhopefreedom @lovemyfamily2003 who have previously discussed this topic in a central location.

I understand you do not want to be dismissed. Where is the Geneticist that you have done research on? Are they at Mayo Clinic?

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@erikas

@csalter Welcome to Mayo Clinic Connect.

Of course you want to find the best provider possible.

You'll notice that I moved your question to an existing discussion. I did this so you could connect with members like @rois4richo @healthhopefreedom @lovemyfamily2003 who have previously discussed this topic in a central location.

I understand you do not want to be dismissed. Where is the Geneticist that you have done research on? Are they at Mayo Clinic?

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I'm wondering the same. I have a long list of EDS and Marfan Symptoms. I requested a genetics appointment to discuss this, but have not heard back. It appears there are not any specialists at Mayo for this.

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@csalter

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).

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I have a lifetime of symptoms from EDS, and now have a name for it. I am presently being evaluated at Mayo, but not having a great experience. Twice there have been specialists who reviewed medical tests from Mayo and wrote reports without ever talking to me or asking me for medical history, and then they wrote reports saying I was fine. In both cases, they completely ignored the abnormalities on the tests and then declared me to not have medical conditions that I do not have, and that therefore the test is negative. They should have been focusing on the abnormalities of the tests, which happen to coincide with EDS, rather than saying I don't have POTS, and therefore am not sick. If I had known that going to Mayo would involve doctors being on my team who would not even meet me via telehealth, I might not ever have gone here.

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@sallysunshine

I have a lifetime of symptoms from EDS, and now have a name for it. I am presently being evaluated at Mayo, but not having a great experience. Twice there have been specialists who reviewed medical tests from Mayo and wrote reports without ever talking to me or asking me for medical history, and then they wrote reports saying I was fine. In both cases, they completely ignored the abnormalities on the tests and then declared me to not have medical conditions that I do not have, and that therefore the test is negative. They should have been focusing on the abnormalities of the tests, which happen to coincide with EDS, rather than saying I don't have POTS, and therefore am not sick. If I had known that going to Mayo would involve doctors being on my team who would not even meet me via telehealth, I might not ever have gone here.

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@sallysunshine I am sorry to hear that you haven't been happy with your visit. I am wondering if you've brought up your concerns with your care team and, if so, what they shared with you.

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@amandajro

@sallysunshine I am sorry to hear that you haven't been happy with your visit. I am wondering if you've brought up your concerns with your care team and, if so, what they shared with you.

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My internal medicine doctor realizes that the out of range issues on the tests are very serious. It is amazing to me that a cardiologist and a neurologist are ignorant of the serious kinds of medical issues which cause this to happen. I'm lucky I have a U of MN cardiologist who is a nationally recognized expert. I have found a neurologist in the cities who is also very good… some Mayo doctors are not so good.

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