Monday, May 5, 2014

Another day, another doctor :-)

I met with the Mitochondrial/Genetic doc, this morning.  

Nothing particular accomplished.

I don't fit the profile, at all, of having a primary Mitochondrial Disorder.  Neither does she think there's reason to check FOR secondary mitochondrial problems that may have been drug-induced.

She basically said ... she doesn't think mitochondrial problems explain my situation, and that ... even if genetic disorders do ... we've only sequenced the genomes of about 7,000 of the probably 22,000 genes, and there's nothing actionable to be done, even if they DO find genetic issues in me.

Translation: it's expensive testing, and you don't seem to qualify.

Although she couldn't honestly say how much of my drug reactions were 'metabolic' (how drugs are metabolized by the liver) versus 'allergic' or 'immune-mediated,' she did recommend I get P450 testing, and referred me to Pharmacy to see if they'll order it.

It's one of the tests that Allergy/Immunology deemed not worth doing.  They were probably right, but .....

This afternoon, I was seen by Ophthalmology.  

The ophthalmology technician couldn't measure the alignment problems of my eyes.  She finally said that ... if I wasn't seeking an eyeglass prescription from Mayo ... could we skip this part ??  Yeah.  My eyes are vexing to most eye doctors.  The alignment issues are very rare, very unstable, and can change from minute to minute ... like the focusing issues. 

The opthalmologist said what they always say: your eyes are bone dry, but do not show obvious signs of 'corneal staining --' true pathology ... scarring ... frank disease.  The corneas did not seem swollen.  No obvious meibomian gland dysfunction or blepharitis.  

He didn't seem to know much about Corneal Neuropathy, but understood my .... er ... discomfort.

He also said he saw enough loose conjunctival tissue (conjunctivochalasis) to understand why scleral lenses were no longer an option.  He mentioned the chalasis surgery, but said it has its own inherent risks, and that .... as I've heard ... the chalasis is likely to return, particularly with the amount of suction a scleral lens MUST have in order to stay in place.

He went over all the basics about lubricating drops, punctal plugs (mine are all cauterized), fish oil, moisture goggles, humidifiers, etc., etc., etc.  Very nice guy, but I just smiled and nodded.  You're only looking at my eyes with a 40 power microscope, Doc.  Get your hands on a confocal microscope, and check out my corneal nerves at 1000X maginification, and THEN we'll talk ;-)

But there was a clear positive, today: I walked for almost an hour AFTER Ophthalmology (with my eyes fully dilated, and clamped 99% shut in the Minnesota sunshine), and ... rather than need to collapse on the bed .... had enough energy to stop for a nice dinner before heading back to the hotel.  

It was a moment, and I had to be grateful for it.

When I got back to the room, I saw a couple things on my Patient Portal website: the reports from Pathology's review of my liver biopsy slides and the report from Radiology from my abdominal ultrasound.  Long story short ... it just looks more and more like it was a drug-induced liver injury, attributable to Cymbalta.

While most alternatives would be worse .... this one DOES mean ... that the whole "prescription meds" thing is now INFINITELY complicated.  In some ways, a worse diagnosis would have been simpler.  

I've been saying that since Christmas.  Nobody really agrees, but .... hey.

But I don't think I can wonder, much longer, whether or not it was drug-induced.  I think I'm sold.  

Still awating all the ... er .... stool sample results and Radiology's review of my ORIGINAL MRI images where they saw a 'stricture' in my hepatic bile duct.

The results of my Total IgG came back significantly lower than they were in January.  Should we test for the IgG Subclasses ... which is the basic nature of my Primary Immune Deficiency (IgG Subclass Deficiency) ??  The Immunologist said no.  My total IgG wasn't low enough to merit checking the subclass levels, even though .... if it was my already-deficient subclass levels that fell further ... that might explain the ongoing infections.

Nope.  Sorry.  Not gonna' do it.

The culture test came back on the snot found in my ethmoid sinus.  Staph Aureus.  Aware of my drug issue, the ENT is prescribing a kind of antibiotic ointment ... that I can dissolve in a saline irrigation solution ... and use to rinse out my sinuses a couple times a day.  I'll buy the stuff tomorrow and start on it.

So ... yeah ... sinus infection.  That wasn't a surprise either ;-)

The tired has set in.  The dry room is searing my poor peepers.  Gotta' put my prescription swim goggles on ... watch TV ... and go to bed early.

Another day down ... with just a hint of style and grace ... here ... in the Gulag.

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