Folks, October 21, 2009
As you all know, I have had a very traumatic time with dealing with dystonia (onset July 2008) after having an adverse reaction to Ciprofloxicin, in part because of less-than-sensitive physicians. After a lot of misdiagnoses that left me completely disabled, unable to work, care for the kids, often unable to communicate, blind from spasmed eyelids, and in utter misery, a neurological specialist from China diagnosed me with Generalized Idiopathic Dystonia with Chorea and Ballismus. His diagnosis was confirmed at Johns Hopkins and by my current neurologist. In addition, I have complicated hemiplegic migraines which cause a frightening array of neurological symptoms, including semi-coma like states and stroke symptoms. This was a real problem because the migraines overlaid on the dystonia caused increases and decreases in symptoms that confused the diagnosis. The doctors sedated me initially but now, I am getting effective symptomatic control with prescription anti-cholinergic drugs, anti-seizure medication, naturopathy and acupuncture. Life is slowly getting better. I have returned to work part-time at a lesser responsibility position and I cope.
Attached is a link to a story about a 26 year-old Washington Redskins Cheerleader that received the seasonal flu shot and was afflicted similarly. She was treated at some of the hospitals that I was. Not only does my heart break for her because her career relied on her physical abilities, but also she has had difficulty getting diagnosed. I feel a bit of a kindredness for her.
I am not saying to avoid Cipro or the flu vaccine but if your instincts are that you are not getting the diagnosis that resonates with you for any health issue, educate yourself, gather your internal strength and keep looking for help. I went to a top hospital and was misdiagnosed and was told by my doctors to stop looking. But, my life and quality of life matter–everyone’s does. I have deep respect for anyone who commits to a life of medicine and endures the lengthy educational process. However, (and it goes against the cultural grain) but I fully recognize the humanness of doctors and know to follow my instincts. Had I done what I was told, I would still be in a bed with incessant movements, blind, mute, semi-paralyzed while my children grew up in other rooms. That is unacceptable. There are many medical options in this country. At one point Jon and flew to Indiana to see a clinical pharmacologist who had experience with hundreds of patients who had adverse Cipro reactions.
Thanks for the ear,