← Return to Possible Ehlers-Danlos Syndrome with craniocervical instability

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@zebraspoonie

Hello. Painsomnia here. I've been denied several times, whether to Clinical Genomics, or to General Internal Medicine, with zero explanation, or appeal rights. I've had the worst few years, struggling on my own, to make it to work or appointments, due to the combination of severe hypermobility and chronic widespread instability, (possibly more than one type of EDS), Scoliosis, systemic Lupus, Sjogren's, ME, Hashimoto's, and thensome. My thyroid stopped responding to the meds several years ago, no one in the cities can make sense of it. It affects Everything, worsens Sjogren's, in turn creates major sinus, dental and GI issues, and it can even worsen muscle weakness, which in turn increases the instability and subluxations, it's all So interrelated. All other providers refer to Mayo for genetics, for EDS, since their own providers will not evaluate adults anymore. Or for mast cell. But I'm getting denied every which way now, for any of my plethora of complex conditions, even with an extensive family history of rare disorders. It worsens the ptsd, and makes one wonder, is this also a women's rights issue?

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Replies to "Hello. Painsomnia here. I've been denied several times, whether to Clinical Genomics, or to General Internal..."

Hi @zebraspoonie, welcome to the community. I moved your message to this discussion about Ehlers Danlos syndrome so that you can meet others members like, @redhead63 @jigglejaws94 @blossom2016 @derrickbff and @jenniferhunter, who also sought a possible Ehlers-Danlos Syndrome diagnosis.

I’m sorry to hear that you have not been able to find a specialist to confirm a diagnosis. It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. in some departments, like General Internal Medicine, demand for services exceeds our ability to see all the patients. You may consider asking your doctor to submit a referral for you, possibly to a different, but related department.

Have you seen a rheumatologist for the autoimmune diseases you've mentioned?