Narcolepsy Medical Care Transitions and Challenges (Part 1 of 2)

I recently helped a friend and fellow person with narcolepsy briefly by sharing my personal experience regarding medical provider transitions and challenges.

It’s honestly been both the most eye opening as well as difficult medical diagnoses I have received.

How my journey with narcolepsy began

My journey started at age 36, where I went to a neurologist with complaints of chronic headaches and walked out with not only a diagnosis of obstructive sleep apnea but also narcolepsy.

This medical provider is a board certified and accredited American Association of Sleep Medicine (AASM) sleep specialist as well as an expert in other neurological disorders, so I had no reason to question the diagnosis received.

In fact, my diagnosis developed over time as we identified relationships of my life experiences (see my previous articles).

I once wrote off as personal quirks as part of this complex and diverse medical condition.

The reality of a shifting narcolepsy diagnosis

The neurologist I saw initially worked hard to determine what my health conditions were, and I started the journey as most patients do, by dealing with the symptoms one at a time.

Unbeknownst to me, I came to realize that this diagnosis would be repeatedly challenged by other sleep specialists in the field.

I had an unfortunate situation of moving about two months after my diagnosis with narcolepsy.

In the face of these transitions across all aspects of life (work, family, housing, schooling for children, etc.), I forged ahead with attempting to just maintain narcolepsy treatment I had barely started.

Lost medical data and the fight for credibility

I did not transition medical providers easily as I had to get referrals from a PCP in my state (regardless of insurance rules) and was fortunate to find a PCP quickly that could aid in these referrals.

However, the initial consultation with a new sleep specialist not only left me feeling gaslighted (she told me she could not even prescribe maintenance of the medication I was on and accused me of being drug seeking because I was on a stimulant), but also without continued care for some time.

The difficult situation I was in started at the first neurologist’s office: a fired, disgruntled former employee deleted patient medical data collected, which included my own.

What the second provider received was not one person’s data but two with slightly conflicting results and therefore unreliable to show my diagnosis. Instead of confronting the first doctor and correct the obvious error, this doctor chose to use it as a reason not to provide care.

What was a clear diagnosis at the time, immediately became a grab for providers at making me repeat the MLST test, which I had only just endured within the last year. Cost of time off from work, insurance authorization, the actual test itself, and care for a child; none of these which I was yet prepared to do.

To top it all off, it was the peak of a global pandemic so testing was being held under strict conditions, and I became low priority for this retest.

When narcolepsy's tests don’t tell whole story

I eventually found a sleep specialist that would accept the documentation I had given the special circumstances surrounding my medical data integrity issue.

It took me over a year from diagnosis to find a new sleep specialist.

My medical journey was complex enough that to make sure I had more concrete data to ensure my diagnosis was type 1 narcolepsy.

A genetic test had become available and additionally an analysis of spinal fluid could be used to evaluate your orexin (also known as hypocretin) levels.

I thought of at least these two tests, one would produce a positive result.

To do these tests, my care transitioned to another sleep specialist with the capabilities to perform these tests.

Not only did I suffer through the spinal tap, but I also ended up with a complication from the procedure that required a blood patch. Both tests were negative, but what was more frustrating was the medical gaslighting that followed the series of tests.

Vanessa's journey continues. Stay tuned for Part 2 of her journey.