Tuesday, January 26, 2010

Muscle Biopsy in the near future.

Two Appts today.

1. x-rays of both hips. The right one wouldn't sit the way the radiology tech wanted it too... I had to politely remind her that there was 28 years of joint grinding and subluxing keeping it form being where "she" needed it... The left one decided to make a big POP when she positioned it, so pretty sure it will be subluxed ever so slightly in the x-ray. Fine by me. Got a hilarious reaction form the tech, and just more evidence that EDS type 3 really is a problem. The rheumatologist was very nice. She did more labs to rule out more autoimmune issues, did the x-rays for baseline, or to assess damage. But, she tended to agree with the Neurologist and decided a muscle biopsy was her advice as well. We talked a little about some of the issues with muscles and joints, but never got into as much depth as the neurologist. Overall I think she may be good for me to follow the EDS. She was knowledgable, and she didnt discount type 3 as a "benign" or less problematic type, so we'll see.

2. Muscle Biopsy February 4th. That's my sons 3rd birthday. Of course, as expected, the EMG came back pretty much normal. The neurologist is still leaning heavily on Mitochondrial disease. It's been getting harder and harder to use certain muscles, central muscles, like back and neck and thighs and upper arms, abdominal. Sitting up has become a matter of propping. Ha. Walking is geting harder. Of course there are times when I am like "wow I feel ok, lets see what we can do..." Mistake. It never turns out well. Going upstairs (2 stairs in the office) is pretty hard. Being coordinated has gone completely out the window...

3. Audiogram (hearing test) on Thursday. Gotta get what you can while you still have good insurance, right?

4. PFT (pulmonary function tests) tomorrow morning.

She harped on me a little more about using a cane instead of the walker... Still waiting for the walker. Have you ever reached those levels where if you stoop down one more level, you will just give in to it altogether? At least right now I am accomplished, well, in my uncoordinated ways, with the cane. I feel as if I give in to the walker, that will be like slipping down the rope a little farther, and I will get used to it, and then the cane will be obsolete... Disturbing thought I know. And whats the next step after a platform cane?? A wheelchair... Really?? Maybe not, but that is how it feels.

I'm going to pop my head in at Scottish Rite tomorrow to print out my W2 and get a few things. Wonder what kind of rumors that will spawn...

Eric is worried. Of all of my goals in our life, I wanted to create an environment of peace for him. Well, I am pretty sure that I accomplished the opposite...

And of course the looming question that I keep putting out of my head: I'll write it here and maybe forget it: What if the bopsy is inconclusive? Whats next?

OOOOh!!!! Great NEWS!!!! Nikki got straight A's this semester!!! Good girl!!! And she aced the TAKS test in reading and Math!!! I am so proud!! Got her Diary of a Wimpy Kid Cartoon edition for her hard work. She oloves that story. To feel like she is not the only weird kid! haha.


  1. My son also loves the Wimpy Kid books! I hope you can get some answers soon :(

  2. Am reading not quite up to commenting atm. So just popped in to say am here just not pedantic! Do I hear feint whoop of joy over the wibbly wobbly web.

    straight A's time for celebration. Popped in and popping back out again. Will hope to be able to spend more time next time/

    Thank you for posting. I'd worry if you went all silent.

    Take care Trish.

    The phrase of the week in our house seems to be - work on core stabilising arghhhhhh......

  3. I think I'm more worried about you not posting! I'm checking my core to make sure it's not selfish me missing your humor and writings... Well, maybe a little, no, but really, how are you? I hope you "feel" better soon!! =)