Cut and Dry would be to easy...

I wish so much that for once something would be cut and dry, black and white, yes or no... I am in a frenzy inside right now. I spoke with the neurologist today who said that the electron microscopy of the muscle biopsy showed no abnormalities of the mitochondria... That's not to say there isn't a disorder of mitochondria, because there have been cases come back with totally normal results and still had some other not well known form of mitochondrial disease. But it does fuel my fire for an answer.

With the neurologist questioning mitochondrial disease and the geneticist questioning Ehlers-Danlos as a total cause, and my total clinical signs of Cushing's Disease but fluctuating lab tests, how can I not go into a frenzy in my brain? I just want one thing to come out black and white! No gray spots, please...

And after talking to both my primary care and the neurologist, it seems that the "fight for a diagnosis" is coming to a close and being replaced by the "lets just get you into physical therapy and get that swallowing problem fixed with therapy..." Really? Does anyone not see the reason why they need to know the underlying cause of those problems before the 2ND lame attempt to work on them? Do they not remember me going through 2 months of physical therapy with no improvements? Oly now for me to continue what I was taught in therapy on my own and discover that on the good days I can do the therapy and more, and on the bad days I fight to stand up???? Does no one else see a reason to figure out why before wasting more precious time on therapy instead of on figuring out the answer??

I have a sudden, same old feeling of aloneness, abandonment, where I must do the research, the work, the begging and pleading for tests, alone, by myself, AGAIN.... Why has no other physician tested any other hormone labs? They know I'm off?

Don't get me wrong, I love my doctors. If I had what they specialized in I would trust them with my life, and when I thought they were right I did trust them with my life. I will ask for the referral to the endocrinologist. My PCP told me she would make the referral anyway, so I will pursue it. I will not bother them anymore. My PCP asked that I keep "her updated on my progress" via email, and I cant help but laugh because there will be no progress when there is no diagnosis or treatment. I do not see PT as a treatment because on good days I can trump the PT regimen and I know the PT will see that, so what good is it?

I feel as though I have been tied to weights and thrown down into the bottom of a well, raining outside, and now I must figure a way out before the water fills it and I drown. God is my ultimate physician, my ultimate rest and peace and the answers to my questions and now I am back to square one, on my knees and pleading my case to Him. It feels as though I have been waiting for Him to move for a long time now. It's like the previews in a theater. Just when you think it's your movie coming, you find out it's just another preview.

I have never been known to take the easy road, not purposefully of course, it just seems that is my nature; To take the long, bumpy, treacherous terrain up the mountain to the waterfall. Why can't I seem to get the waterfalls that have bridges or stairs? I guess in the long run it will make this waterfall that much more satisfying to finally reach. I just hope it's not bittersweet and to late.