I'm Still Waiting

I went to see doctor #30 in September and I didn't hear back in over a month. I was seriously starting to wonder what was going on with this guy. It turns out the doctor got sick, needed surgery and was out for a few weeks. He assured me he is All Better Now.  I'm happy for him. However in the meantime, I am nowhere near better and thoroughly sick of feeling horrible all the time.  I suppose there isn't much you can do if your very highly specialized doctor is sick, except wait until he is better and hope he doesn't die.

So in case you haven't guessed, we finally spoke last week. None of my labs were surprising, according to #30. My Epstein Barr titers are still very high, as are markers for Parvovirus.  He didn't test me for the new CFS virus that everyone has been talking about recently. Nor did he test me for porphyria, which he had specifically said he would do.  I had that abnormal result months ago and no-one is willing to follow up on it.

*sigh*

So #30 seems convinced I have CFS. He said he is getting together with a expert on MR Spectroscopy  on Monday -today actually, to talk about new imaging techniques for the brains of people like me.  I am to call him tomorrow and talk about ...something.  I'm not sure what. I go the impression that they were thinking of putting together a study, but I'm not sure. I'm in two minds about a study.  The last one in which I participated ended up with me getting unnecessary and experimental surgery and being charged for it.

But it also looks like this imaging; -although definitely interesting-  is considered experimental (but non-invasive) and therefore not covered by insurance.

And I'm poor.

AND there is still the whole having-to-trek-into-the-city-three-times-per-week thing which has not been resolved.

Maybe we'll get it all sorted out tomorrow. 

But I'm not holding my breath.

Stay tuned.

Comments

[yanub]

I am with you on the testing. I am sick to death of having money extracted from me in the name of testing, with no tangible benefit in my daily life.

If it is CFS, what will this doctor do to treat you? And why can't he just do that now? Is the treatment dangerous? Or is there no treatment he will try, but he feels a publication coming on and needs test results?

[fridawrites]

It seems to me if they are doing a study they should pay for it--that's only fair to people who already have extraordinary medical expenses.