This morning the call came – finally.
My daughter has an appointment in two weeks with an Orthopedic surgeon for her pain and joint hyper mobility. We are still waiting for the Genetics clinic as we are hoping for a formal EDS diagnosis since no one seems to want to get involved – it’s like a “mystery” diagnosis doctors seem to want to run away from.
The cardiology results of the last couple of weeks I assume fall within acceptable range. Nothing is said of her “blue fingernails, blue legs, palpitations, dizzy spells, overall weakness, and near fainting episodes”. But still, our family physician insists that my daughter has POTS or something related to the malfunction of her autonomic nervous system and as such is not comfortable in treating some of her other symptoms (which would involve the risk of lowering her blood pressure but could alleviate some of her other problems).
Although I’m relieved a “serious” appointment is coming up soon, I realize that a diagnosis of dysautonomia is unlikely. Yet I’m convinced that this condition is keeping my daughter from being functional – in addition of course to the pain she is feeling because of hyper mobility.
So how do I cope with the frustration and anxiety of things not taking us one step further?
Well, I found a neurologist who specializes in dysautonomia and will have my doctor write a referral tomorrow morning. That of course will mean another 8-hour trip but still, it’s better to open another door in advance as I don’t expect things to be moving quickly.
In the process, I found an interesting article on the topic which you can access here.