Friday, June 11, 2010

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.


  1. *sending over gentle hugs* Seems like some of us are doomed to live in the grey areas, huh? I'm sure you know this, but the only thing you can do is to keep at it. Be persistent--there is someone out there who can help you. After 12 years of being told, "You're exaggerating, you're making it up, you're normal but being dramatic," I gave up on doctors until someone told me I had to keep going because there was someone out there who knew how to help me. And when I went back, I was diagnosed with EDS a year later. It's hard as hell, but all you can do is keep plugging along and making them do their jobs or finding docs who will. I hope you find answers soon!

  2. While I have not gone through this myself. You might try seeing a speech pathologist for the choking issues. As I understand it they are the professionals that can help with that particular issue.

    Besides it seems that you just might need to go somewhere completely new for a fresh perspective. Some of the doctors just out of med school are familiar with more problems than those that have been out for a while as well. Just a thought. They may also still be interested and willing to seek answers.

    Here is a hug, I am thinking of you too! Not knowing is always a hard long road. Not that knowing is easier, you just do not feel as crazy. =)

  3. Have you been screened for Chiari? I know allll about the gray areas - that's where I live ;) I have EDS, Chiari, fibromyalgia and autonomic dysfunction issues. But surprisingly hardly any of that is in my medical records!! The doctors don't always LISTEN to each other you see :) I gave up on doctors awhile ago. I finally figured with my "rare" conditions it was better for me to go the non-conventional route. Have you ever been to a naturopath? I found out I was sensitive to certain foods and once I figured that out, my fatigue was GREATLY reduced! Most doctors say diet doesn't affect anything but I proved that wrong. I guess my point is, start investigating things on your own. You probably have some instincts to go on - if you really think about it - YOU are the expert on YOU! The doctors haven't given you any clear-cut answers but you may be able to figure out some other solutions they don't know about. Diet, massage, gentle exercise, and certain supplements have helped me. Good luck!!!

    - Sarah