dielaughing
I am a 49 y/o female, divorced, with one child. From 17 y/o on, I struggled with severe debilitating migraines. (my best relief was during my pregnancy.) I went through a stressful divorce, had to apply for disability, and have been struggling to make ends meet while trying to be the best mom possible - ever since. For about a year and a half or more, I had extraordinary fatigue and was sent to a psychiatrist b/c it was felt that I had depression. Finally, in 2007, the diagnosis of Narcolepsy(w/o cataplexy) was made. I managed by taking various stimulants, and was managing as well as could be expected until December of 2009 when I was driving along and another motorist ran a stop sign and struck my vehicle, "T-Bone" style. My car slammed into something else, then spun, I counted 21/2 times before I lost consciousness. I went to the ER and they checked my heart, checked for broken bones and what-not, observed me for a while and then discharged me with papers that read "Head and Neck Injury." I phoned a lawyer that afternoon. I've never been the same since. I've suffered from syncope, back & neck pain, difficulty sitting up (and holding my own head up on my neck), tremors, fasciculations, seizures, alopoecia areata, tinnitis, difficulty speaking, swallowing, writing, spelling, short-term memory problems, and "sludgy" brain. Worst of all, I have episodes of near total paralysis (I go "ragdoll") wherein I lose control of all of my limbs and can't even hold up my head (it flops over), but I do not lose consciousness. I can hear and see and, if my cell phone is near a hand, I can manage a text message (albeit with extraordinary effort and lots of mistakes). The longest episode lasted three hours. More recently, I had an episode during which I could barely breathe, and couldn't talk at all. I've had numerous tests and been in and out of ERs, Urgent Care facilities, several ambulance rides, more lab tests than I care to recount, and seen more of my Primary Care Physician and neurologist than all of my family members added together. MS has been ruled out. Scleroderma has been ruled out, too, as has numerous infections, viruses, etc.. My next appointment is at a Muscular Dystrophy Clinic. It's been difficult for me to be taken seriously. My neurologist refused to believe I had anything more than narcolepsy w/ cataplexy, despite the fact that 3 neurologists had already told me it was "unlikely to develop cataplexy so long after my [narcolepsy] diagnosis." I THINK that something happened from that car accident, or, I have a rare form of MD (like Periodic Paralysis), or, perhaps, both, if Trauma can cause a reaction leading to a genetic mutation making me the first in my lineage to have a disorder that is usually seen in prior generations. I need to live. I have a child whom I care deeply for and cannot bear the possibility of "orphaning." I pray I don't have ALS. I'm exhausted. My social circle has diminished, and I can feel my muscles drifting away on me. I'm beginning to feel a little hopeless. can anyone relate?
