Connect
← Return to Possible Ehlers-Danlos Syndrome with craniocervical instability
Discussion
Possible Ehlers-Danlos Syndrome with craniocervical instability
Bones, Joints & Muscles | Last Active: Jun 20 10:24am | Replies (68)Comment receiving replies
Hello. Yes, thanks, and I'm familiar with many others that have gotten the same generic denial letters in recent years too. I've been dx with some things since my teens, but things are vastly worse now, was denied even when the U of MN tried referring me a couple years ago. Someone from patient experience is supposed to be looking into this, but it's just absurd that for years, other clinics have refused to consult with us for a genetic condition that I would never in a million years want to pass on, and is by far the most debilitating out of every disability I have. Yet no one will even validate it. I already deal with discrimination in the workplace, it shouldn't be this way in seeking proper treatment and respect in healthcare either.
Replies to "Hello. Yes, thanks, and I'm familiar with many others that have gotten the same generic denial..."
Connect
@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