Mysterious Illness

I'm a 41 year old woman (125 lbs) who'se life changed dramatically 11 months ago.  I was extremely active and in the best shape of my life.  Insomnia settles in for three weeks then I start sleeping again but experience extreme fatigue and weakness.  When I have these episodes.  My feet won't lift off the ground but just drag like walking on ice with a pair of boots.   I can no longer do any physical activity. I experience absolutely no pain. Three months ago I was started on a CPAP machine. ( I had finally been sent for a sleep study after telling my GP that the more I slept the less I could walk in the morning.  If I had a sleepless night I was awake and alert the next day).   My symptoms improved drastically on the CPAP as in being able to walk normally and being able to stay awake until supper time.   I have had somewhat of a life since then but cannot exercise whatsoever.  Just when I thought the worst was over  I end up in the emergency department this weekend due to  a bout that suddenly came on in the afternoon after going going to the movies. My body started going stiff and my legs were no longer lifting and my arms were just as week.  Unable to walk or stand unassisted by the evening.  MRI brain and Cpine was normal three months ago as well as a thorough EMG workup.  After an episode I feel the urge to kick my legs (like restless leg syndrome but awake) and also to stretch my arms and legs.  I no longer have a normal life.  Sleep doctor  does not think I have chronic fatigue but mild sleep apnea with less than optimal sleep patterns and suggested being assessed by Neurology.  After 6 hours in emergency dept  on Sunday my symptoms had already subsided at least 60% when I was finally seen by a neurologist.  All my testing was normal at that point.  I came in in a wheelchair and left walking.  These severe bouts don't last more than 1-3 days.I have been waiting to see a Neurologist since November/09.  Welcome to Canada!!  

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

Sleep is an interesting field. There are conditions within this field called cataplexy, which is the sudden loss of tone of the muscles usually triggered by an emotion. Another condition is called sleep paralysis which is paralysis of the muscles during sleep onset or on awakening. It may last 15-20minutes.  

If you have not had one completed, an overnight sleep study called a PSG is highly recommended. You should also have a multiple sleep latency test (MSLT) to rule out narcolepsy-cataplexy.  If these are unremarkable, a prolonged EEG should be obtained to evaluate the electrical activity of the brain during one of these events.

I agree that you should see a neurologist. If possible, you should see one that specializes in sleep disorders.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck!!!