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Possible Ehlers-Danlos Syndrome with craniocervical instability
Bones, Joints & Muscles | Last Active: Jun 20 10:24am | Replies (68)Comment receiving replies
@zebraspoonie, greetings to you. I am very sorry for the medical issues you are experiencing. And I know how disappointing it is to be told that right now, Mayo is unable to admit you for treatment. You might think that being a Connect mentor, having a caregiving role with a patient, and promoting Mayo Connect publicly might have swung the dial in my favor. It didn't and given what I know now it shouldn't have.
Within neuropathy as a group of conditions, there is actually no cure. It is even difficult to get a spot-on diagnosis. As the pain of small fiber neuropathy (SFN) spreads to tissues, muscles, and bones, it just means that nerves in those areas are giving up the ghost long before I, at least, am ready to do so. So what does Mayo say to me every time I apply? "Truthfully, everything that can be done for you is being done by other institutions and clinicians." Mayo cannot add anything to my regimen that will be of benefit.
I look at it this way. Mayo has verified by the rejection of my application that I am receiving good treatment elsewhere. And most importantly, that leaves a space for someone else who can be helped and whose life can be improved by the world-class care available at Mayo.
May you be free of suffering and the causes of suffering.
Chris
Replies to "@zebraspoonie, greetings to you. I am very sorry for the medical issues you are experiencing. And..."
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Thank you, and so sorry for your experiences too, sounds very similar. :/ All I'm even expecting is an "official" diagnosis, for the one thing, that has been outright refused elsewhere, which is why they refer to Mayo, because my needs are not being met, contrary to the generic letters sent out. I have always accepted my conditions, it's the treatment and access that is the issue. It's enough to attempt to make it to work, to support myself, and juggle multiple health conditions, then to be sent in circles (by many), for years. They all need to work together, they cannot all refuse certain groups of people. Other clinics have geneticists, makes it even more baffling. It's a very systemic issue, and hope that there are major changes and equity on the horizon.