SZcat
New member
- Joined
- Sep 8, 2012
- Messages
- 7
- Reason
- Loved one DX
- Country
- US
- State
- MI
- City
- Detroit
Hello,
I posted a year ago when my father-in-law passed away from ALS in 2012. My thread was locked, so here is a new post.
This post concerns my S/O who has had a second round of EMG tests (first round was a year ago).
Family History of ALS with 2 family members: Father passed away from ALS in 2012, diagnosed in 2010. Brother of my S/O was diagnosed with ALS originally over 15 years ago, and the diagnosis stands, however a comment was made that it was unlikely ALS, but a MND currently in remission. This Brother has taken Rilitek for many years. Rilutek did not appear to have any effects on the Father.
A year ago we noticed my S/O had atrophy in his left leg. The EMG test showed degradation in the nerve (sorry if I have the terminology incorrect) but we were told to wait and see what happened in a year. Just before Xmas the second round of EMG tests were performed and we were shocked to learn there is significant degradation in the left leg since last yer (1.4 to 0.8). The right leg shows mild degradation, but this, thus far, is attributed to disc issues.
Heavy metal tests negative. Urine tests pending. Rilutek recommended but not finalized.
At this point, the neurologist is puzzled. There are no fasticulations, considerable wasting, and the beginning of foot drop symptoms in the left leg. I have noticed over the past year how difficult it is for my S/O to get up from chairs. He is a very tall man, so this isn't completely new.
From reading the forum, it seems ALS is usually one limb onset and yet his father and brother both had symptoms in both hands. Neither showed symptoms in the legs.
Its hard not to assume ALS, but we remain positive.
Any thoughts or advice? The hope is that the neurologist remains puzzled, and for some reason hasn't confirmed ALS. Is that standard?
Any help is appreciated.
I posted a year ago when my father-in-law passed away from ALS in 2012. My thread was locked, so here is a new post.
This post concerns my S/O who has had a second round of EMG tests (first round was a year ago).
Family History of ALS with 2 family members: Father passed away from ALS in 2012, diagnosed in 2010. Brother of my S/O was diagnosed with ALS originally over 15 years ago, and the diagnosis stands, however a comment was made that it was unlikely ALS, but a MND currently in remission. This Brother has taken Rilitek for many years. Rilutek did not appear to have any effects on the Father.
A year ago we noticed my S/O had atrophy in his left leg. The EMG test showed degradation in the nerve (sorry if I have the terminology incorrect) but we were told to wait and see what happened in a year. Just before Xmas the second round of EMG tests were performed and we were shocked to learn there is significant degradation in the left leg since last yer (1.4 to 0.8). The right leg shows mild degradation, but this, thus far, is attributed to disc issues.
Heavy metal tests negative. Urine tests pending. Rilutek recommended but not finalized.
At this point, the neurologist is puzzled. There are no fasticulations, considerable wasting, and the beginning of foot drop symptoms in the left leg. I have noticed over the past year how difficult it is for my S/O to get up from chairs. He is a very tall man, so this isn't completely new.
From reading the forum, it seems ALS is usually one limb onset and yet his father and brother both had symptoms in both hands. Neither showed symptoms in the legs.
Its hard not to assume ALS, but we remain positive.
Any thoughts or advice? The hope is that the neurologist remains puzzled, and for some reason hasn't confirmed ALS. Is that standard?
Any help is appreciated.