- CASE FILE
Learning to walk again at 40 years old. I woke up a month ago with weakness and dizziness which quickly progressed. I can no longer walk.
ABOUT THIS CASE FILE
I woke up a month ago and was having trouble walking. Just days before I was on vacation hiking, kayaking and horseback riding with no problems other than fatigue. My arms and legs felt like dead weight, heavy and numb. Every movement of my head, neck or eyes made me dizzy and I started to vomit. My symptoms progressed so quickly that I lost all ability to walk on my own within a week. I don’t have much pain other than my neck and back which comes after even a small amount of activity. My eyes hurt when I move them. My vision is blurred and I get very sick just trying to read or focus on anything. My muscles quiver and give out when I try to use them. I am also losing control of my bladder and don’t even feel that I have gone. I am very sensitive to light and sound which can trigger my nausea. I am also having memory problems and fine motor skills are getting worse. I get a sharp pain in the back of my head when I cough or vomit which leads to an instant migraine. (They ruled out complex migraines.)
I have been struggling with my health for several years, but nothing this drastic. Mostly migraines after being overstimulated (by noise and light) and neck and back pain after small amounts of activity. I have also gained 60 lbs in 5 years when I never had a weight problem before. I also have had severe fatigue to the point where I almost fell asleep at stoplights while driving. (I stopped driving.) But, I was always able to walk until a few weeks ago.
I have been in and out of the hospital getting test after test. I have had MRIs of my brain, neck and lumbar spine, CTs of my head and neck, a lumbar puncture, tested for inner ear problems, tested for Lyme, tests for autoimmune diseases, urine tests, hormone labs and everything came back normal. My neurologist says it is a psychiatric thing because my symptoms don’t fit any diagnosis. I saw my Psychiatrist and she said it couldn’t be psychiatric because I haven’t had any recent stressors or medication changes and my depression is under control.
My insurance denied me staying in the hospital any longer because the doctors couldn’t find a diagnosis. I was transferred to a rehabilitation hospital (I’m still there). They are teaching me how to walk again, but my progress is slow. I am only keeping food down because of anti-nausea and vertigo meds. I can’t work and don’t know when or if I can work again. I have been bedridden for almost 5 weeks, unable to go to the bathroom or shower by myself.
My testing has been reviewed my multiple specialists including neurologists, neurosurgeons, a spine specialist, a chiropractor, a vestibular therapist, physiatrist and my PCP. Every doctor says nothing is physically wrong with me. My insurance is a narrow network plan that only covers medical treatment by one specific hospital system and I can’t afford to pay out of pocket for a second opinion. My neurologist is also refusing to do a referral for me to see a different neurologist in his hospital system. No other neurologist that accepts my insurance will see me without a referral from my current neurologist. So currently I have no doctor who is willing to do more testing to find a diagnosis.
I feel like I suddenly lost my life as I knew it with no explanation as to why. I never imagined that I’d be learning to walk again at 40 years old. I am a mother of 3, a business owner and normally am quite active. Now I feel like a prisoner to my own body. I keep hoping that I’ll wake up one day and feel better but that is not likely. I am desperate for answers.