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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, Does anyone have any information on TIA's in regards to EDS? Recently my 34 year old daughter has experienced episodes of a couple of days that she felt extreme tiredness, then she has numbing on left side, even tongue and face, hard to swallow etc...presently she is also in rehab facility after having the initial episode, that has left her with left side paralysis, unable to move or walk. She has had two more occurrences since then...all affecting left side. Although throughout the years many new symptoms and conditions have presented themselves, this one is by far the worse. As mom, I am just trying to seek any information that may assist in a hopeful positive outcome. I am trying to get a neuro consult, however, not any easy task and especially with the ignorance of the common medical has no idea even what EDS is and finds it easier to want to diagnose more of a "head-issue". I laughed when they told me this, and laughed harder when I told them that even an individual that is having the worst day ever cannot will themselves to have paralysis etc...This has been a learning journey for sure...however, her whole life is crazed now since she herself is a nurse , and cannot even begin to understand any of this. So, any information in regards to this would be a welcome. Thank you in advice for anyone's one time and knowledge of any of this. Individuals with EDS, hypermobility, etc...are not medical textbook cases. Even after asking one doctor what experience and knowledge they had in regards to EDS, was told that there was a few paragraphs mentioned in their medical books, Thank you again in advance for any direction or input. Have a good day.
Replies to "Hi, Does anyone have any information on TIA's in regards to EDS? Recently my 34 year..."
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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Depending what star you are located, I know that St Louis Barnes hospital does not have adult care for EDS
Genetic testing rules EDS whether you have it or not, but then finding a geneticist is a chore in small towns
My genetic doctor did DNA testing I have the results but she recently passed away so on Illinois Medicaid I am stuck for further testing which gen-x results said to have further testing, but it ruled out EDS but I have Hypermobility and I have bad genes so need further testing
I lived in North Carolina when I became unable at age 55 to take care of myself and my ex husband in Illinois took me in to caregiver for me
In Asheville North Carolina there is a good EDS place to go it’s called Mahec, if you are insured and in the area I recommend going there and also recommend genetic testing
I myself have all the symptoms of EDS but it is not because the scale they use one thing cancels out another yet many markers of EDS, yet thankful the DNA testing says something is wrong which we knew because muscles are not working correctly
If by chance she has Hypermobility it in itself can cause many joint problems and recommend physical therapy to help with that
I hope you get answers sooner than later, bless you both !!