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Ehlers Danlos Syndrome - Who is the best doctor to see?
Bones, Joints & Muscles | Last Active: 1 hour ago | Replies (45)Comment receiving replies
Hi @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?
Replies to "Hi @lovemyfamily2003, welcome to Mayo Clinic Connect. I've merged your 2 messages into one thread that..."
Hi! I have hypermobile EDS and I am scheduled for a laminectomy on May 14. The surgeon has suggested that there is a very good likelihood that I will need a fusion operation performed on both L4 and L5 after this procedure... While the surgeons and spine specialists with whom I have consulted, they all give a nod to 'EDS' when I mention it, (which is much better that the recognition even a few years ago!) But I just don't think they have a deep understanding, and can advise me thoroughly about the expected out come and recovery period. The surgeon with whom I have planned to go ahead says that I should be back to my regular life in 3 weeks!? I'm just not so sure....
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Thank you so much for your response. Actually, the patient is myself and I feel that I have had symptoms for many years that have been misdiagnosed. Symptoms: knees that gave out as a child into young adulthood; constant need to crack knuckles, neck, and back from childhood on: double jointed, esp in hands; severe insomnia most of my life; scoliosis;; gi problems including reflux and fecal incontinence; urinary incontinence; RLS for past 18 years;stretchy loose skin over back of hands, diffuse migrating joint pain and back pain; recent pancreatic insufficiency; orthostatic hypotension. Also type 2 diabetes. I have been sent from specialist to specialist including rheumatologists with no satisfaction. I am now depressed and ready to give up. No real pain relief. By the way, I am 68 years of age. I worry about passing genetic disease to my daughters and grandchildren. My mom has severe hypnosis and my sister's have scleroderma and crohn's disease. Thank you so much even for the opportunity to share my frustration. Thanks for listening.