BEYOND FRUSTRATED

Mom is no better.  As of today, her symptoms are WORSE.  I can't explain her movements other than she feels the urge to move and IS moving ALL THE TIME and she is jerking her upper body every 30 seconds or so.  Her movements are present in ALL her waking hours and some when she sleeps.  I've started videoing her for documentation.  She is not getting much sleep or much needed rest and it is taking a toll.  She was seen by a UAB neurologist last week who feels like mom has Restless Leg Syndrome (RLS).  Well, hello!  Yes, she does and we've had that diagnosis since the beginning of May and is on medication for RLS which has been increased many times over the last 5 weeks.  Mom had a follow up with her Tuscaloosa neurologist this morning.  He still has no idea what is going on with her, but he is trying everything he can think of to help her.  He does not believe RLS has caused these constant movements and jerking in mom's body.  He took her off the RLS med that she started in early May simply because there is no improvement, only worsening of her symptoms.  He is also increasing another med that supposed to help with the jerking.  She was jerking so bad this morning I thought we were going to have to take her to the ER.  Also, her Tuscaloosa neurologist wanted her to go back to her UAB neurologist.  So I called to get her an appointment, but the UAB neurologist is out of the country until JANUARY!!!  I've since called her Tuscaloosa neurologist to let him know.  I'm waiting on him to call me back.  In the meantime, I am researching other Movement Disorder Clinics around the country.  This has been on my mind 24/7 for many weeks now.  I've googled and googled.  I've thought and thought.  I've called and called.  I've talked and talked.  I'm so frustrated.  NO, I'm BEYOND frustrated.