Flip4it
Member
- Joined
- Jan 28, 2012
- Messages
- 14
- Reason
- Learn about ALS
- Country
- US
- State
- Maryland
- City
- Myersville
I haven't been on here in a while but I am deeply saddened and extremely anxious awaiting an EMG and nerve conduction study scheduled on Oct. 9th. After a collection of apology letters from doctor's and 7 neurologists, we are at the point of not turning a blind eye to my condition. On Sept 7th, a doctor looked at me and was so angry at the treatment I have received and horrified at my condition and told me to "immediately get on the phone with a neurologist that knew what they are doing". My condition is finally been termed "severe". How angry it makes me.....duh......I've been saying this for 11 months and playing the doctor shuffle. My left hand is almost gone (skin over bone), the atrophy is widespread and severe now, I was discharged from physical therapy because I've gotten worse and in August the fasiculations set in. I finally sent two pictures (1 year apart) and a video tape to a patient advocate. My God, Ray Charles could see how severe my situation had become. Initially I complained about my hands for a long time, progressed to the left side of my side and has now decided to move to the right. The side of my neck is concave and really having trouble holding up my head now. I look like a damn chicken compared to the avid golfer that I was in the summer of 2011. I've had 11 months to prepare and it won't knock my socks off. What angers me is that it's bad enough when you're fighting for your life but you have to fight with incompetent doctors too. They tried to blame it on a herniated disk! It's been a crazy ride for sure. I'll keep you posted but new neuro suspects motor neuron disease so we'll see. I don't want to be a member of this forum (no offense) but depending on how it goes, I have a very interesting story....we've all got one. I just turned 50 this month.