Valerie064
New member
- Joined
- Apr 2, 2019
- Messages
- 3
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- Collegeville
My husband has had non-stop twitching, primarily in his legs, for 7.5 months. He has lost multiple family members to the c9orf72 gene and discovered he also carries the gene after several months of twitching. The hope was to find out that he didn’t have the gene the twitching was anxiety related.
We have an EMG and meeting with the head of our local ALS clinic at Penn on Thursday. He believes his left leg feels weaker after long hikes, walks, etc...but I’ve never noticed his stride affected. We went for a bike ride last weekend and he flew up and down hills. He still lifts regularly but feels his left leg is more fatigued, even though he’s lifting the same with it as his right.
Since February he’s talked about feeling a pressure in his throat and feels he has to focus more on speaking clearly and swallowing even though I’ve never heard a difference and he still eats at twice the speed of most. He’s so convinced that due to his genetics and these symptoms that he will receive a diagnosis Thursday.
While I can’t see or notice any of them myself, his conviction has my heart aching that life as we’ve known it is about to end. He is 37 and our daughter is 8. The sadness I feel that the lives we have been living and the future we’ve been planning since teenagers are all about to change.
I just wish someone could give me hope that our news on Thursday won’t be devastating and that the twitching had caused him to obsess over symptoms that aren’t really ALS.
We have an EMG and meeting with the head of our local ALS clinic at Penn on Thursday. He believes his left leg feels weaker after long hikes, walks, etc...but I’ve never noticed his stride affected. We went for a bike ride last weekend and he flew up and down hills. He still lifts regularly but feels his left leg is more fatigued, even though he’s lifting the same with it as his right.
Since February he’s talked about feeling a pressure in his throat and feels he has to focus more on speaking clearly and swallowing even though I’ve never heard a difference and he still eats at twice the speed of most. He’s so convinced that due to his genetics and these symptoms that he will receive a diagnosis Thursday.
While I can’t see or notice any of them myself, his conviction has my heart aching that life as we’ve known it is about to end. He is 37 and our daughter is 8. The sadness I feel that the lives we have been living and the future we’ve been planning since teenagers are all about to change.
I just wish someone could give me hope that our news on Thursday won’t be devastating and that the twitching had caused him to obsess over symptoms that aren’t really ALS.
