Today I had an appointment with a neurologist. He was kind, but we didn't get anything accomplished because of a miscommunication--one made because, frankly, I have some trouble communicating verbally these days, and because my medical records were mistakenly sent to the warehouse.
So instead of getting a test done that could have gotten some answers within a week, I get to wait until next month, and worry.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
You see, the neuropathy I've been experiencing in my hands and feet has been increasing to a degree that I can't handle it anymore. So I called my PCP (yay insurance!) and got an appointment with the NP, who took me seriously, both about the neuropathy and the back spasms. No, she didn't throw pain meds at me! She got me a script for Skelaxin (a medication that I've been on before and tolerate well) for the back spasms, and an appointment with a neurologist for an electromyography (EMG) test.
Here is where the miscommunication came in. When I was 19, I had an EMG for a physical injury (fall from a horse, with a small stone hitting just the wrong place), followed by surgery to move my left ulnar nerve from the shattered bone sheath, and the constricting scar tissue that was causing full paralysis. The surgery was successful beyond all expectation, and I regained full use of my left hand, although my sensations never remapped properly. No mind, the hand is strong, and OT made me somewhat ambidextrous. Win, right?
Except with my medical records in a warehouse (and convoluted as hell to boot), and my verbal issues, they thought that ALL my extremities had been tested, and wanted to have those results as a baseline. Perfectly reasonable, except my diagnosis of neuropathy came without EMGs, and several years after my fall and surgery.
Wasted time, wasted effort, frustration.
Okay, not entirely. The EMG wasn't done, but an exam was performed, and yes, I definitely have issues with neuropathy. When I told the neurologist that my old primary told me it was just part of my fibromyalgia, he winced and asked if my old neurologist had tested it (he has gone to lectures by my old neurologist! squee!). No, he hadn't. So after some lovely prick testing (literally, you get pricked with a needle to gauge sensation), as well as the standard tests, I have the EMGs and blood tests in my future.
And if my peripheral neuropathy isn't from fibromyalgia, I'm a bit scared as to what it may be. The options aren't pretty.
MEMORIAL DIARY FOR ULOOKARMLESS
Next Sunday's KosAbility diary will be a memorial diary for CJ, who passed away last night. Please come and share your memories.