Phil's wife
Distinguished member
- Joined
- Apr 19, 2010
- Messages
- 141
- Reason
- Lost a loved one
- Diagnosis
- 05/2010
- Country
- US
- State
- NC
- City
- Wake Forest
Hello,
Hoping to get some much needed advice or suggestions with this. Going to try to sum this up briefly...
Phil has been having progressively slurring his speech for almost 2 years. Not until recently (60days) have things progressed to lead the neurologist into ALS. And since then a lot more has progressed.
slurred speech
fasciculations
fatigue
inability to multi-task as normal
memory loss
not thinking as "sharp and quick" as he used to
hand weakness - can't squeeze my hand, trouble with opening water bottles (last 60 days)
left leg weakness and visually smaller than other leg (60 days)
neck soreness (30 days)
I realize the hands and leg weakness has probably been going on longer, he just didn't notice it until the last couple of weeks. We know he wasn't this bad 30-60 days ago at his last neuro exam though.
Tests - MRI, bloodwork, EEG, EMG, nerve conduction, barium swallow
First neuro (we like) feels it is ALS based on those test results. Wanted to confirm with an ALS specialist. We saw specialist today, he feels it is NOT ALS due to the EMG showing more abnormal results with sensory nerves than motor nerves. He thinks it is Kennedy's disease, although from what I read about Kennedy's it progresses much slower.
We were unhappy with the doctor today because he did not even check Phil's hands, and to me that is a major symptom to look at! He wanted to order a DNA test at their other office but I told him we were seeing someone at Vanderbilt neuro center tomorrow. He basically shut down at that point and offered us no more of his time.
Needless to say we were mad when we left. OH, and on the chart for "billing" purposes he wrote diagnosis as ALS!
Phil is wanting to move forward with some relief from these fasciculations and get moving trying to get a handle on this instead of just sitting back waiting for appointments while we watch his symptoms get worst.
I really feel we need to put our foot down tomorrow and try to get some medication going if we must wait for different tests results to rule other things out.
Anyone else go through this mess while trying to get some answers?
Thanks for any advice or suggestions that can be given.
Thanks, Stephanie
Hoping to get some much needed advice or suggestions with this. Going to try to sum this up briefly...
Phil has been having progressively slurring his speech for almost 2 years. Not until recently (60days) have things progressed to lead the neurologist into ALS. And since then a lot more has progressed.
slurred speech
fasciculations
fatigue
inability to multi-task as normal
memory loss
not thinking as "sharp and quick" as he used to
hand weakness - can't squeeze my hand, trouble with opening water bottles (last 60 days)
left leg weakness and visually smaller than other leg (60 days)
neck soreness (30 days)
I realize the hands and leg weakness has probably been going on longer, he just didn't notice it until the last couple of weeks. We know he wasn't this bad 30-60 days ago at his last neuro exam though.
Tests - MRI, bloodwork, EEG, EMG, nerve conduction, barium swallow
First neuro (we like) feels it is ALS based on those test results. Wanted to confirm with an ALS specialist. We saw specialist today, he feels it is NOT ALS due to the EMG showing more abnormal results with sensory nerves than motor nerves. He thinks it is Kennedy's disease, although from what I read about Kennedy's it progresses much slower.
We were unhappy with the doctor today because he did not even check Phil's hands, and to me that is a major symptom to look at! He wanted to order a DNA test at their other office but I told him we were seeing someone at Vanderbilt neuro center tomorrow. He basically shut down at that point and offered us no more of his time.
Needless to say we were mad when we left. OH, and on the chart for "billing" purposes he wrote diagnosis as ALS!
Phil is wanting to move forward with some relief from these fasciculations and get moving trying to get a handle on this instead of just sitting back waiting for appointments while we watch his symptoms get worst.
I really feel we need to put our foot down tomorrow and try to get some medication going if we must wait for different tests results to rule other things out.
Anyone else go through this mess while trying to get some answers?
Thanks for any advice or suggestions that can be given.
Thanks, Stephanie