Month: November 2009

3 Muscle Biopsies and Still Waiting…

Yes – I am still waiting on a diagnosis, which means my mystery muscular dystrophy disease continues to worsen as UCLA takes their sweet time as usual. I had my third muscle biopsy last month as part of the ongoing diagnostic process. One doctor told me the results would be back in two weeks another told me 4 weeks. It has now been 5 weeks. And just a note – most patients only have one muscle biopsy in situations like this.

The day of the last biopsy was just another example of how this specialist at UCLA is only interested in diagnosing me (at his own pace) and not treating me as a whole person and taking all my symptoms into consideration. His objective seems to be more focused on writing an article about his findings and getting published rather than helping to stop or slow down this disease as it continues to rage war on my body. He still won’t address any of my symptoms like the almost daily headaches, muscle aches, and respiratory weakness.

Not only is he not interested in my day to day struggles with this condition, after the muscle biopsy he refused to prescribe any post-operative pain killers or talk to my friend and aunt in the waiting room upon completion of the surgery. I’ve had two other muscle biopsies, so this isn’t my first time at the circus doc – it feels like a stab wound and is incredibly painful the first few days. Doc disagreed and stated that “his” patients only feel as if they have a bruise. Really? He told me to just take Tylenol, but I can’t take Tylenol because it puts too much stress on my liver – which I tried to explain to him. He told me to take Tylenol anyway. I wouldn’t mind his poor bedside manner if he was solving the mystery faster and keeping my other symptoms from getting worse. I’d take the real life version of Dr. House if it meant answers, a treatment, and some relief from the pain and weakness.

In a few weeks I’m off to the Mayo Clinic in Minnesota – maybe I’ll have a better experience there.