Surprise! I’ve been living with the wrong diagnosis for about 10 years! Wow – that news hit me pretty hard the first time I heard it back in January after my second muscle biopsy.
My neurologist in Vegas finally got Kaiser in California to release my medical records – which is something my local doctors have been trying to make happen for about 4 years! My GP was floored when she heard we had the records as her office had tried and failed many times to obtain them. As my neurologist reviewed my past medical history relating to my muscle weakness he discovered something odd. I had been diagnosed with Inflammatory Myopathy by Kaiser, yet the muscle biopsy they did 10 years ago to confirm the diagnosis had been negative. He said there was no way I could get a diagnosis of Inflammatory Myopathy with a negative biopsy. As all my symptoms fit Inflammatory Myopathy, he felt Kaiser must have screwed up my biopsy. So he did what any other neurologist would do, he re-ran all the tests, the nerve conduction study (ouch), blood work and the muscle biopsy.
My appointment for the muscle biopsy results was about a month after the surgery. I had just about healed from the slice and dice they performed on my leg and was ready to accept a real diagnosis of Inflammatory Myopathy.I was even prepared to take on the steroids and their wicked side effects which would be the inevitable course of treatment along with physical therapy for Inflammatory Myopathy. My doctor took me into a consultation room to go over my biopsy results. He look dumb founded – not a look you want to see on the face of your neurologist. He said the biopsy results were once again negative. What? Blink. Blink. I’m not getting the punch line here. He said the biopsy showed no signs of inflammation therefore I don’t have inflammatory Myopathy. I sat there in actual shock. I had done the research, all my symptoms fit. All the things I was doing to relieve the pain in my legs fit with inflammation. I would take an anti-inflammatory and I had incorporated large amounts of blueberries (the natural anti-inflammatory) into my diet to ease my occasional discomfort. Was all this just a placebo effect because I thought I had an inflammatory condition? I just kind of stared at my doctor and he stared back with confusion and compassion – I thought he might cry. He apologized for not having the answers I was seeking even through it clearly wasn’t his fault. He said I needed to see a specialist either at the Mayo Clinic or UCLA. That there was no one in Vegas who could help me with my medical mystery, that he had exhausted all his local testing and consultation options. Not a surprise, Vegas is not exactly a medical Mecca – well unless, like one of my friends said, “you need a boob job.” My neurologist referred me to a neuromuscular specialist at UCLA (my insurance does not cover the Mayo Clinc – unless UCLA can’t figure out what is wrong with me first. But if UCLA can’t solve the puzzle, I’m pretty much screwed as another friend told me in only a way he could and I would have to agree with his observation).
So I have an appointment at UCLA set for May 7 – 8. There will be questions and needles and tests, oh my! They have already told me they will do a nerve conduction test during this visit. This leads me to suspect they will re-do all the tests including the muscle biopsy. Fun times, but I can’t live with the wrong diagnosis – clearly. And I can’t live in mystery because I’m getting worse. Each day is a struggle and with this newest symptom: all over pain, it is getting even harder to make it through each day and night. At least I can still type – I wish I could do more work from home. I really dislike feeling so useless and like I’m letting my team down. I kind of feel like I’m just struggling to make it through each moment until my appointment at UCLA, but it just the first appointment and I know I can’t expect answers or even relief out of that visit. All I can expect it to be is the first step in the re-diagnostic process. Or the doctors first glimpse at their next medical journal article.
Anyone have a contact at House or Mystery Diagnosis who I can sell my story to in exchange for them paying my medical bills?