It's only Tuesday and I can already tell this is going to be a frustrating week.
I am waiting on the insurance lady from my current Rheumatologist's office to call me back with information that I need to fix an insurance claim problem involving some lab work the doctor ordered with incorrect diagnosis codes. My insurance company won't tell me what the diagnosis codes were, and the doctor's office staff claim they can't communicate with my insurance company directly about the problem, so it's kind of like solving a riddle. An expensive riddle.
I am also waiting on a call back from a new Rheumatologist. My sister-in-law's husband comes from a family of doctors, and one of them recommended this guy. Because I am tired of bouncing from specialist to specialist with no results, I made it a point to call and ask if he sees patients with Ehlers-Danlos Syndrome.
"What?" The receptionist asked.
"Ehlers-Danlos Syndrome," I repeated.
"I've never even heard of that. Spell it for me."
Something tells me he's not going to be of much help.
Lastly, I am expecting a call from a Case Management agent at my insurance company. For people with chronic illnesses, they can assign a nurse to your case who will help manage your care and get you the appropriate doctors, tests, etc. All I want more than anything in this world is an upright MRI. You'd think I was looking for a new liver. It's one simple test, one effing test that my insurance company will gladly pay for because I am costing them upwards of 1 million dollars just because I keep seeing doctors that have no knowledge of EDS. Gee, I know! I'll just call and ask the doctor if he knows anything about EDS before I make the appointment!
"I don't know, you'll have to get a referral and make an appointment so we can view your records before we'll know if can treat you," said the less-than-friendly receptionist at the neurologist's office that I called this morning.
It's frustration with situations like this that drove me to contact the Mayo Clinic in Jacksonville about making an appointment. I have a friend that recently returned from the Mayo Clinic and he raved about their thoroughness. I filled out the appointment request online and received a callback within 24 hours.
"We don't have any doctors here that are knowledgeable about your problem," said the friendly Mayo Clinic employee. "All those doctors are in Rochester, Minnesota, our largest branch."
"Well, I don't really need an EDS specialist, per se. I just need a neurologist that knows enough about connective tissue disorders to order an upright MRI so I can be properly evaluated for Chiari Malformation."
"We don't do that imaging here, you'd have to go to Rochester."
Fine, fine. I told him to forward my info to Rochester and they still haven't called me back.
In the meantime, I keep getting worse. Last night, I noticed I now have tremors in my toes. MY TOES! It's neat, because I'm not used to ever moving my toes individually, so it's a more foreign sensation than the tremors in my hands. Neat, and a little frightening. I love new symptoms! Also finding it harder and harder to stand or sit up without being overwhelmed by nausea, headaches and neck pain. It's not the POTS acting up, it's my effing neck. I know it, other Chiari patients know it, and the goddamn textbooks know it. Stabbing pain from Valsalva maneuvers! Check. Hypnagogic hallucination from brain stem impingement! Check. Central Sleep Apnea from brain stem impingement! Check. Headaches originating in the back of the head/neck! Double check. Constant nausea when upright! Yep. Neurological symptoms exacerbated in gravity-bearing positions! Cranial-cervical instability! Long term memory loss! Aphasia! Oh, and my pulsatile tinnitus is coming back, which --upon first glance-- might be confused with a symptom of Pseudotumor Cerebri, except my OP on my lumbar puncture is not high enough... you could be like my first neurologist and assume I have PTC anyway and immediately treat with humongous doses of Diamox, thus making me sicker and bedridden for months. OR (and I know this is ludicrous thinking) you could explore other options... like temporary CSF blockages caused by shifts in brain anatomy in gravity-bearing positions caused by CHIARI MALFORMATION! See what I did there? Full-circle logic.
My current neurologist originally thought I had Chiari, but when my supine MRI came back clear he decided to give me Butalbital and see if I develop a brain bleed. Or at least I assume that's our current plan. If you think I'm symptomatic for Chiari, but then you rule out Chiari, does that mean I'm normal? Jesus Harold Christ, doctor logic baffles me sometimes. Anyway, shortly after that I was sent to a geneticist who diagnosed the Ehlers-Danlos Syndrome. Thanks to the power of Google combined with hours of lying in bed with nothing to do but read medical studies on my iPhone, I discovered that patients with Heritable Connective Tissue Disorders (like yours truly) need upright MRIs because our brain anatomy can shift and move in "small but important" ways when we're in gravity-bearing positions... like sitting or standing up. I called my neurologist's office and left a message, explaining in a few clear, short sentences that my connective tissue in my brain moves around because of the EDS, and I need an upright MRI to truly be evaluated for Chiari. His nurse called me back and said that he needs "proof of that" because he'll have to jump through insurance hoops to get me that test, blah blah blah. I feel I should note that I suspected I had EDS before this doctor ordered the supine MRI, so I suggested to him at that time that we do an upright MRI because I have documented neck problems indicative of CCI. He literally scoffed.
Needless to say, I am searching for a new neurologist. For any of you out there that are experiencing similar problems with physicians unwilling to learn anything new, here's the "proof":
http://www.chiariconnectioninternational.com/docs/Hereditary_disorders_of_connective_tissue.pdf
http://prettyill.com/downloads/Dr._Diana_Theory_rev_03-2011.pdf
And information about the hypnagogic hallucinations and their relationship to conditions that cause brain stem inpingement/impairement...
http://brain.oxfordjournals.org/content/121/10/1819.full.pdf
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