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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 Mom34eds,
I think you will find this clinical research of interest. While the nervous system is not considered a primary target of EDS, it is getting more attention
- Neurological manifestations of Ehlers-Danlos syndrome(s): A review (2014) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4300794/
See this excerpt:
This comprehensive overview of neurological findings of EDS is "organized under various subheadings, including pain, fatigue, headache, stroke and cerebrovascular disease, brain and spine structural anomalies, epilepsy, muscular findings, neuropathy and developmental features. The emerging picture defines a wide spectrum of neurological manifestations that are unexpectedly common and potentially disabling. Their evaluation and correct interpretation by the clinical neurologist is crucial for avoiding superfluous investigations, wrong therapies, and inappropriate referral."
Is your daughter currently in the care of a physician with expertise in Ehlers-Danlos syndrome? How is your daughter doing in rehab?
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Hi Colleen, Thank you for your well needed information. And as per your question , no she is not under the care of a physician with expertise in Ehlers-Danlos syndrome....;o( They are hard to find and up to this point had been holding her own s0-t0-speak. And as per rehab...it has been a journey for sure!! She is getting OT/PT however, has had 2 more events that led up to being unresponsive-not remembering anything ...and sent to Er only for them to release back to facility with no answers or even the desire to find some. She still has paralysis on left side that seems weaker with each event. I am trying to get an outside neuro consult for her, however like going through fort Knox since she is considered under "there" care at the rehab facility. I did get an ortho consult, but ortho said not ortho and needs neuro. I will read the site you offered...thank you again. Have a good day.