NothingButLove
Distinguished member
- Joined
- Dec 25, 2016
- Messages
- 106
- Reason
- Lost a loved one
- Diagnosis
- 11/2016
- Country
- US
- State
- CA
- City
- Anaheim
Here's a forum I never wanted to join... There's a long version of this story. This is the medium version:
It all started when my wife twisted her ankle in January, 2016. She developed a "dropped foot". I thought the dropped foot was a result of her twisting her ankle. How wrong I was...
In February , she tripped in a parking lot and broke her elbow. This is a 57 year old women who had never broken a bone in her body. She hadn't even seen a doctor in about 10 years.
Just about the time her elbow had healed, in April she fell in the kitchen and broke her hip. After the hip healed, her PCP ordered a ton of "normal" tests: colonoscopy, chest x-rays, mammogram, pap smear, bone density, blood work, etc. She was diagnosed with osteoporosis, low vitamin D and a yeast infection. It finally came time to visit the neurologist to see if my wife would be a good candidate for decompression surgery on her drop foot. The neurologist tapped her joints with a rubber hammer, tested the strength of her limbs and asked if I noticed any "slurring" in her voice. He then ordered a MRI.
On our second visit in early October, we were informed she didn't have a stroke, MS or cancer. He ordered an EMG and nerve conduction test. While my wife was in the lobby making the appointment, the neurologist dropped the "ALS bomb" on me. I told the neurologist he was wrong to which he responded, "I hope so".
I went home and consulted Dr. Google. After reading how long most people take to be diagnosed with ALS, I thought this neurologist was a quack. How could he make this diagnosis from two 15 minute sessions before an EMG and nerve conduction test? It was early October and the EMG was scheduled for November 4th. Over the course of the month of October, I went from "I'm 100% sure she doesn't have ALS" to "Hmmm... perhaps this is due to complications of the hip surgery" to "O' God, please don't let it be ALS". After the EMG, he referred us to the UCI ALS and NMD Center. On November 21, it was official.
My wife's right leg is gone and the left ankle is going. She can still walk short distances with the rollator (not sure how she does it) but it's getting harder every day. Mentally, my wife is super strong. She's got that "it is what it is" attitude.
On the other hand, I'm a complete mess. I'm am constantly thinking about my wife and ALS. To carry on everyday and wear a smile in front of wife is difficult. My wife can say little things that make me feel so sad so quick, it feels like my heart and mind is being sucked into a black hole. The social worker at UCI said the initial shock will wear off and to some degree, she's right. October was worse than November and November was worse than December. Still, my wife and ALS dominate my thoughts every day.
I'm crying as I write this but somehow I always feel a little better after telling this story. I feel drained but better. Merry Christmas and thanks for reading...
Rob
It all started when my wife twisted her ankle in January, 2016. She developed a "dropped foot". I thought the dropped foot was a result of her twisting her ankle. How wrong I was...
In February , she tripped in a parking lot and broke her elbow. This is a 57 year old women who had never broken a bone in her body. She hadn't even seen a doctor in about 10 years.
Just about the time her elbow had healed, in April she fell in the kitchen and broke her hip. After the hip healed, her PCP ordered a ton of "normal" tests: colonoscopy, chest x-rays, mammogram, pap smear, bone density, blood work, etc. She was diagnosed with osteoporosis, low vitamin D and a yeast infection. It finally came time to visit the neurologist to see if my wife would be a good candidate for decompression surgery on her drop foot. The neurologist tapped her joints with a rubber hammer, tested the strength of her limbs and asked if I noticed any "slurring" in her voice. He then ordered a MRI.
On our second visit in early October, we were informed she didn't have a stroke, MS or cancer. He ordered an EMG and nerve conduction test. While my wife was in the lobby making the appointment, the neurologist dropped the "ALS bomb" on me. I told the neurologist he was wrong to which he responded, "I hope so".
I went home and consulted Dr. Google. After reading how long most people take to be diagnosed with ALS, I thought this neurologist was a quack. How could he make this diagnosis from two 15 minute sessions before an EMG and nerve conduction test? It was early October and the EMG was scheduled for November 4th. Over the course of the month of October, I went from "I'm 100% sure she doesn't have ALS" to "Hmmm... perhaps this is due to complications of the hip surgery" to "O' God, please don't let it be ALS". After the EMG, he referred us to the UCI ALS and NMD Center. On November 21, it was official.
My wife's right leg is gone and the left ankle is going. She can still walk short distances with the rollator (not sure how she does it) but it's getting harder every day. Mentally, my wife is super strong. She's got that "it is what it is" attitude.
On the other hand, I'm a complete mess. I'm am constantly thinking about my wife and ALS. To carry on everyday and wear a smile in front of wife is difficult. My wife can say little things that make me feel so sad so quick, it feels like my heart and mind is being sucked into a black hole. The social worker at UCI said the initial shock will wear off and to some degree, she's right. October was worse than November and November was worse than December. Still, my wife and ALS dominate my thoughts every day.
I'm crying as I write this but somehow I always feel a little better after telling this story. I feel drained but better. Merry Christmas and thanks for reading...
Rob
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