Autonomic Testing, Part One – The Outside Referral Obstacle Course

After a string of events that started with reading about postural orthostatic tachycardia syndrome (POTS) online, since many people with chronic fatigue syndrome (CFS) also have it, and ended with a neurology referral and a tilt-table test with a cardiac electrophysiologist within my network, I ended up with an outside referral to an autonomic disorders specialist. Before our consult appointment (which I have not had yet), the doctor wanted me to do some autonomic tests in their testing lab. That 2-hour testing session included:

• Cardiovascular testing with head-up tilt (essentially another tilt-table test), the Valsalva maneuver, and deep breathing
• Quantitative sudomotor axon reflex test (QSART)

BUT before I get to all that in Part Two, let’s talk about the major pain of seeing a new doctor outside your healthcare system when you’re used to an HMO…

How many hoops can a sick person jump through?!

I don’t know about you, but one of the things I love about my HMO is that all of the doctors I see within it have access to the same medical records and I don’t have to worry about getting them the information they need. This outside referral, while it is very much appreciated, means jumping through a lot of the bureaucratic hoops I normally don’t have to deal with.

For starters, the referring physician had initially written something on the referral paperwork that didn’t allow the new clinic to order the testing, and it took me several back and forth phone calls/online messages to finally get authorization for the testing. This was not helped by the unfortunate timing of the referring physician going on maternity leave mere days after making the referral. Big thanks to her nurse and the covering neurologists, as well as my new best friend, the outside referrals coordinator, for helping me work all that out!

Then came the medical records. Ordering copies of my medical records and diagnostic images was actually a lot easier now than it was the last time I had to do it (when I moved from one region to another and wanted to bring all my records with me) because it can all be done online. Luckily the initial referral included giving this new doctor access to the last two years of my medical records so he already had those. However, it turns out he wants copies of my medical records going back further, as well as my medical records from when I first got sick in that other region. These documents are literally hundreds of pages long because they seem to be pretty redundant and inefficiently formatted. Luckily he said I can bring them on a USB and/or a disc instead of having to print them out – phew!

Because it was so easy to order the records and I wasn’t initially sure exactly how much they would want, I went ahead and requested a copy of everything they had electronic versions of. This went back about 10 years and was about 800 pages long, not including the records from the other region. Yikes! I didn’t read the whole thing, but I did skim some of the more recent records and was both pleasantly and unpleasantly surprised at things I found. I had read the advice before to occasionally request copies of your medical records so you can see what your doctors are actually saying about you, especially if you are applying for disability. Based on this, I can say that I agree with that advice.

Next was the patient questionnaire and wondering how many more times I’d have to list my medications, allergies, medical and surgical history, family medical history, and fill out a multi-page symptom checklist. I know they need all of this information, but I would really love for there to be one master version of this that every medical professional could start with and then just have supplemental pages if there is more they want so that most of this could just be printed out or photocopied from the last time I did it. Sigh.

That must be it, right?

Nope! After all that came the actual preparation needed for the testing. What medications and/or supplements did I have to not take? For how long? When and what could I eat? What parts of my body needed to be clean without anything put on after bathing? What was I supposed to wear?! (Really, this was important, and they literally thanked me for following the directions while strapping things on me.)

To simplify, I usually try to go through the instructions days/weeks before I actually need to do anything. I then write out a schedule of when to do this and when to stop doing that so that I can keep track of it all even if the brain fog thickens in the middle of it. It was especially important this time because I pretty much went straight into test prep mode after Millions Missing/Mother’s Day weekend, which was also followed by a bit of a crash/symptom flare that left me nauseated and overstimulated for a good chunk of the days leading up to my testing.

Anyway, the autonomic testing is done (more on that later), as well as some lab work he ordered (and more hoops to jump through to have the labs done in-network and covered by my insurance), and I’m now waiting to have my hour-long consult appointment with the doctor to talk more about my symptoms and history and all that other stuff from that patient questionnaire.