Diagnosis – First Follow-up

So before I even got to the doctor’s office, my new health care provider approved the treatment that Anthem initially balked at claiming it was experimental.  With that in mind I figured this appointment was to set that treatment into motion.  I was scheduled for chest xrays and a spirometry.  The x-rays I understood as that would give the doctor a picture of what if anything has changed regarding the indications they are using to say I “likely” have sarcoidosis.  The spirometry is an interesting test, neither painful or uncomfortable, just more taxing than you would expect.  I don’t understand the purpose of this test.  Yes, I know Sarcoidosis more frequently affects the heart and lungs, but I have not had any symptoms with those functions.

So tests done, time to see the doctor.  Admittedly I am jaded walking in but that is more about the whole process that has unfolded.  First thing I was asked about was the methotrexate.  I told the doctor that I really didn’t experience any changes in the few weeks that I took it.  I was quickly corrected, rightfully so, that I was supposed to continue taking it.  Hey the pills ran out at the same time as the folic acid I was prescribed (to counteract the effects the medication would have on my already suspect blood chemistry) and I thought doc said it would take a few weeks for it to start showing results… Okay so I received a new prescription of methotrexate and the “refills” part was emphasized and I am back on that.

One of my other priorities is try to narrow down a nagging questions.  Much like the “likely” diagnosis, I was unclear as to how this was the cause of my TM (Transverse Myelitis).  I had seen references to neurosarcoidosis but I had to ask if when the doctor was saying I had sarcoidosis she was referring to neurosarcoidosis or was general sarcoidosis triggering my immune system and the TM was  a by-product (I have to rely on the respiratory specialist because the neurologist was quick to wash his hands of my case when sarcoidosis was mentioned – yes that bothers me alot).  The doctor did confirm she was thinking my condition is specific to neurosarcoid but of course there is no definitive statement.

I am on the second week of my second course of treatment with the methotrexate.  I don’t believe there are any positive changes, but it just gets the mind more active trying to find things.  Every new pain or sensation triggers the “hmmmm that’s new, maybe that is my nerves relinquishing and now I can feel the pain” that ultimately leads to “no, just more fun”.  There are times when my back is killing me and my leg seems to function better and vice versa but eventually I am left with this is just the symptoms.

Oh yeah I started this with a note about a treatment.  So me receiving correspondence stating it was approved doesn’t really mean it was approved.  When the doctor’s office called to confirm they were told it was still pending.  So more waiting…


6 thoughts on “Diagnosis – First Follow-up

  1. John,

    Sorry to read about your medical issues, especially how Anthem acted. I am very lucky to live in the UK, where we have a true national Health Service and where such actions happen far less!

    Also – when approving your blog comment I managed to delete it. Fat fingers strikes again. Can you re-comment and I’ll try to not screw it up again.

    • I certainly don’t want to debate whether it would have been handled better in a socialized medicine system. I think the issue is more the medical association or even more the fact that we don’t know everything that we try to project we do. Sarcoidosis seems like a classic example. They believe it exists and understand it but they don’t know enough to say with confidence this is it and this is what we are doing to learn more.

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