I have no idea how to feel AKA the neurology follow-up

Today was my neurology follow-up.  If you've been following along, you'll remember that at my last appointment they ordered genetic tests and that when I contacted them for the results, I was told that they were "held."  When I asked what "held" meant, I was told that we would discuss that at my appointment.  So, to summarize, I spent the better part of the past month freaking the hell out.

Turns out "held" actually meant "we decided to cancel the test for now."  After we pointed out that I had been, you know, FREAKING THE HELL OUT the past month wondering about this and how simple it would have been to say "oh, we decided to put that test on hold for now" we did get something resembling an apology.  

So, there are no genetic test results because there was no genetic test.  They decided they wanted to narrow things down a bit more and follow-up a few more leads before ordering an expensive test that could result in major problems for me in the future in relation to future medical insurers.  

Also, my doctors appear to have grown souls or something in the past 6 weeks.  I seriously almost asked if they were pod people.  We were treated like adults with semi-functional brains this time.  My questions were actually, gasp, answered.  There was a genuine dialogue - helped by my tossing medical jargon around.  (Why, yes, I do like words, I collect them.)  They asked both of us how we felt and were coping with this crap.  The resident who sees me promised me that he will do everything he can to get to the bottom of this and that he'll be consulting with his colleagues as much as possible.  He also told me he'll have more time starting in July to do a bit more research.  While I do wish they had been this on top of things months ago, it's nice that it's happening now.  

So, in summary, they get another chance.  As Tom commented - it seems as though they get a little better every time we go in.  Maybe by the end of all this they'll be super-awesome doctors.

On another front, the thyroid tests I had rheumatology run last week had come back.  My thyroid is acting up again.  My TSH levels are up - that means that my thyroid is getting a message to make more thyroid hormone because my body thinks I don't have enough.  I also appear to have some thyroid antibody action going on - which may well explain the elevated TSH - the antibodies could be eating my thyroid hormone thinking they're invaders.  (They're all like "pew pew pew" and then my thyroid hormones are all like "I can't shake him!  He's right on my tail! Arrrghgh!")

Thus, I will be seeing an endocrinologist.  I've wanted to see one for a year, but my GP didn't think it was really necessary.  Sigh.  All of the hypothyroid stuff could be causing or exacerbating my neurological and movement symptoms.  So, until that's clarified, we're waiting on doing a muscle biopsy to see why my thigh muscles are wasting or melting or whatever the hell it is they're doing.  My gut says something else is going on besides just the thyroid stuff, but we'll see.

Anyway, in summary - we don't really know jack.  Still.  I still can't work.  I still feel like crap.  I still seem to be getting worse.  

I do know that the next person who tells me "you're too young for disability" is going to get smacked with my cane.  I don't want to go on disability, but I also can't stay unemployed indefinitely.  I need the help that disability programs can provide to either start up a home business or get hooked up with home-based jobs and I need a bit of help in the meantime.  I worked from the age of 15 onward.  I paid my taxes.  I'm not asking for a free damn handout. Unfortunately, the process of applying is stalled for now as I don't think I'm likely to be approved without a better diagnosis then "hmm, dunno, that's weird."  Not to mention that Social Security has "lost" record of my employment history between 2004 and 2006, thus technically rendering me ineligible for benefits.  So I also have to find our tax returns for those years.  

Hopefully we're getting closer.