Trying to preemptively satisfy insurance is not the best way to go about health care!

My disease is starting to feel like a full-time job (at least very least a half-time job) and they way in which the doctors are going about structuring this job is lousy!

Feb 14th I had an MRI of my cervical spine.  This was done to try to figure out the cause of my fine motor control loss issues.

Feb 20th I had a follow-up appointment with my Rheumatologist.

Feb 25th I had a follow-up appointment with the Neurologist that was scheduled on Feb 21st after I saw the Rheumatologist.  I’d called to let them know I was getting worse (developing this lovely muscle weakness that I talked about here and here) several weeks ago.  When I spoke with the nurse on Feb 20th when she called to schedule a skin biopsy I reminded her that I’d called weeks ago to indicate that I was doing worse.  She called back on the 21st and had this appointment scheduled for me.

I now have an MRI of my left thigh (to investigate this muscle weakness) scheduled for March 10th, an overnight sleep study (I talked about in my last post) on March 17th and a muscle biopsy on March 26th.

And all of these appointments are at the teaching hospital an hour away.

So what’s with the title of this post and my assertion that these doctors are organizing this “job” of mine in a lousy way?

Before I went to the Rheumatologist on the 20th I received an out-of-the-blue call from the Neurology nurse indicated that the doctor wanted to do a skin biopsy to look for small fiber neuropathy.  She’d never mentioned it to me while I was there, I never mentioned it.  I hadn’t called her about it.  There had been no test result received recently.  It was truly out-of-the-blue.

Until I went to the Rheumatologist that same afternoon.  The first words out of his mouth when he walked into the room (an hour after I’d been placed in there) were “Did neurology call you to talk about a skin biopsy?”  That’s when I realized that he had prompted that call – he’d called over to neurology and requested that they perform one.  He discussed that he’d asked for it based on the fact that my EMG/NCS was normal and he knows that it doesn’t pick up on small-fiber neuropathy that may be causing “numbness and tingling” in my hands.  I once AGAIN corrected him that it’s not numbness and tingling – it’s a loss of fine motor control, a loss of dexterity and now a dramatic increase in muscle weakness.  He’s so stuck on the numbness and tingling thing that he’s used it to describe my symptoms at three appointments now and each time I’ve corrected him that it is not an accurate description of what I’m feeling.

He said the reason he asked neurology to do the test is to try to have proof to provide the insurance company when he orders the Rituxan treatment as to why I require such an expensive treatment.  He’s been saying he’s going to start me on Rituxan since I first saw him in October.  Unfortunately, there was always another test to do or another symptom to look into before we began the treatment.

Apparently, as he describes it, the “dry eyes and dry mouth aren’t enough to justify the treatment to the insurance” so he was “looking for some other symptom to document clinically” to justify it.  So my two MRI’s, EMG/NCS study, unbelievable amounts of blood work and trips to neurology have basically all been about finding justification for the insurance company – which is preemptive because he hasn’t even ordered the treatment yet, let alone been asked for the justification from the insurance company.  He indicated that he was waiting for a positive skin biopsy to order the Rituxan treatments.

Again, he’s stuck.  He’s stuck on the “dry eyes and dry mouth” symptoms as what I’m seeking relief from.  I explained to him, AGAIN, that if those were my worst concerns then I would be fine – they’re annoying and irritating, but definitely not as important to me as the fatigue, muscle weakness, loss of fine motor control and pain.  Those are far more life-altering for me.

I began to cry as I talked about not being able to brush my teeth, braid my daughter’s hair for dance, walk or type without muscle fatigue and weakness.  I talked about how my fatigue is so debilitating that it takes large chunks of time out of my life.

At this point he said “we’ll get this figured out” and back-tracked by saying that no matter what the skin biopsy said he’d order the Rituxan and that once he sent the orders it took the hospital about a week to get the infusions scheduled.

I left his office, sobbed most of the hour drive home – not because of anything specific…more just because I’m so tired of this whole journey that it all came pouring out.

The next afternoon I received a call from Neurology that I’d been scheduled for the appointment on the 25th.  I thought maybe they were moving the skin biopsy appointment up sooner (it was set for March 5th).  So I went, kind-of expecting that to happen.  But instead if was a follow-up appointment because I’d indicated my muscle weakness was getting worse.

The Neurologist came in and said the Rheumatologist had requested the skin biopsy but that I’d never reported to her any of those symptoms.  FINALLY!  A doctor actually listening to the symptoms I’m reporting rather than working on treating ones that they are tunnel-visioned into thinking are what’s most important!

I said that I didn’t have any of those symptoms and we both agreed that the skin biopsy was not appropriate and canceled it.  I mentioned the possibility of a muscle biopsy since the muscle weakness is getting worse.  She hesitated and was reluctant to do it at first because my muscle enzyme lab work is normal and my EMG/NCS was normal.  But I kept explaining how it was progressing, she re-evaluated me for weakness and finally agreed to schedule me for a muscle biopsy and MRI of my left quad (hoping to get the MRI in first so that it might show inflammation and guide the doctor as to where to biopsy the muscle at).

This morning I called the Rheumatologist and told the nurse that the doctor had instructed me to call when I had the skin biopsy so that he’d be on the look-out for the results but that the neurologist cancelled the skin biopsy and scheduled a muscle biopsy for a month from now and the results won’t be back from that for 4-8 weeks (so we’re looking at a possible 12 weeks before we see the results from it).  I asked her if he was going to order the Rituxan infusions now that the skin biopsy isn’t happening (since he’d said he’d order them no matter if the skin biopsy was positive or negative).  She said she’d send the doctor a message and get back with me with what he said.

So now I wait.  5 months after I began seeing the doctors at the teaching hospital instead of my local doctors – still on the same non-working treatment and getting worse.

It’s so frustrating to go into to appointment after appointment and have to fight against the tunnel vision of what symptoms the doctor thinks are the most important when they’re far from my most concerning or the ones affecting my life the most.

It’s so frustrating to spend 5 months on what has effectively been a lab work and testing fishing expedition to find some justification for a treatment when the justification hasn’t even been asked for yet.  According to my insurance, you had to have failed to have success with two biologics before being approved for Rituxan.  I’ve failed to have success with three.  I don’t really understand what other justification he thinks he’s going to need!

Are life-altering fatigue, pain, fine-motor control loss and muscle weakness not justification?  Because, trust me, it’s more than simply relief from dry eyes and dry mouth that I’m seeking!

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