Princess Beverly,
I was falling frequently for a year, broke my hand mid 2009,noticed slight gait changes.I wanted to relate everything that was happening to a MVA I was in 3 years ago when I found I couldn't dance anymore.In October, I fell hard and broke my once perfect nose.I started limping then.I went to a chiropracter to order an MRI of the S1 area of my spine.While she was examining me she said,"you need to see a neurologist".I looked down and saw a differential in the circumference of my left leg.I also found I couldn't walk on my toes without that left heel dropping(foot drop).More people drop at their toes so I definitely was not a classic case.My MRI came back, was poor quality and the written report said I had a ruptured disc.After 5-6 more Docs telling me they couldn't do anything about it(none were able to read scans)and three rounds of PT, I went to a neuro that found active and chronic denervation(fibs and psw's) by exam and EMG/ncs.She then wanted me to have a Mylegram/catscan.I went to a neurosurgeon to order it(complaining mostly of weakness from exhaustive stress), and evaluate me further.ALS was never on my mind.After the mylegram, my mind changed. I had no nerves compressed or obstructed in anyway.No disc problems.This was March. Nothing was making any sense to me. I realized, still limping,atrophying,foot dropping, fibrillating that serious was light terminology.The neurosurgeon, who was highly trained in neuromuscular disease before he became a spinal/brain surgeon went over my vast collection of scans,bloodwork, evaluations,tests, etc. He showed me how to read all my scans and I realized the diagnosed of ruptured disc was out of the picture.He told me "your problem has nothing to do with the car wreck or your falls.You have a nerve problem."He then referred me to a Doc at the ALS clinic.I had spent close to 20k in 5 months to be miserably led from Doc to Doc to Doc to PT to PT to test to test to test.(all because that first incorrect,poorly written interpretation of the MRI)I thought I should be having some fun.I am an 18 year cancer survivor(diagnosed very young) that didn't want any similar repeat preformances, but seemed to be getting one nevertheless.I was a hospice RN till December, when I retired because of my disabilities, so death has never been a fear.It's the "dying before the death" that I spent years helping people have some comfort in that I detest.(suffering) Death itself is the easiest part of life,and life is but a twinkle of your eye.
Why am I here? I guess God sent me here.
My latest reports and exams show active and chronic denervation, fascics,(pretty much confined to one(two ALS defined) region.The neurologist's report says "No evidence of WIDESPREAD motor neuron disease".I would prefer he leave out the widespread.But he's as perplexed as all the other Docs were.I lost my H-reflex where before it was prolonged.Where my calcaneous is paralyzed(the heel that drops)there is an absence
of my ankle jerk reflex.I've had three EMG's with three differing conclusions,from three neuros.I am playing a waiting game now.No more Docs for at least 6 months to a year.Last diagnosed S1 nerve root dysfunction(not fixable)
Why am I here? I love my friends and this Forum.I have top-notch truly special friends.
If I could, I would eliminate all their suffering.They eliminate mine by just being there.
Everyone wants their questions answered.Sometimes that is not possible.I hope I answered you,it took way too long(but maybe others were wondering,too).I hope you get all the rest of your questions answered, too.Indigosed seems to have had an epiphany, in regards to your husband's medical problems.Go Indigosed!Stay Close, Princess
