Meissama
New member
- Joined
- Jun 2, 2019
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NJ
- City
- EHT
My fiance lost her father to als 10yrs ago. And it is believed his father passed away as well from the same disease.
She is only 31 and to my eye shows zero symptoms of ALS. She has refused to get genetic due to a fear of a positive result which she figures is her immediate death sentence. I am hoping to lay down the info I have and if anyone could confirm or raise alarms that would be great.
She is 31, over weight but all blood work and such show healthy otherwise. (No emg done though would like to set one up but given current situation, not sure about approval). She has complained of twitching. Sporadic quick twinges. Lasting a few seconds. Calves, knees, back/shoulder region. Doesn't seem to happen when she is in motion just relaxing. As far as I'm aware fascinations are long term fine twitches that last long periods of time that correspond with or are post muscle atrophy/ withering which i see no signs of. No signs of weakness cept for occasional knew give out. Not dropping just, no slurring, otherwise normal motor function. She has 1 older sister who is in her later 30s with no issues.
Her fear stems from her father. He passed away when he was 49 (diag at 48). He was a military veteran who was an accountant for a bus company post military career. He was in 1st Persian gulf war. His father also died of ALS while serving a prison sentence in 1989 in his early 50s. Her father has 3 siblings all still living with no signs of ALS. No other signs of long term FALS. Still awaiting info from UPenn about the specific details of his disease. Hoping for info on which gene.
She has a habit of simply accepting only that she has it. And constantly second guesses everything. Hopefully her seeing other peoples opinions on the matter may help.
Thank you,
James
She is only 31 and to my eye shows zero symptoms of ALS. She has refused to get genetic due to a fear of a positive result which she figures is her immediate death sentence. I am hoping to lay down the info I have and if anyone could confirm or raise alarms that would be great.
She is 31, over weight but all blood work and such show healthy otherwise. (No emg done though would like to set one up but given current situation, not sure about approval). She has complained of twitching. Sporadic quick twinges. Lasting a few seconds. Calves, knees, back/shoulder region. Doesn't seem to happen when she is in motion just relaxing. As far as I'm aware fascinations are long term fine twitches that last long periods of time that correspond with or are post muscle atrophy/ withering which i see no signs of. No signs of weakness cept for occasional knew give out. Not dropping just, no slurring, otherwise normal motor function. She has 1 older sister who is in her later 30s with no issues.
Her fear stems from her father. He passed away when he was 49 (diag at 48). He was a military veteran who was an accountant for a bus company post military career. He was in 1st Persian gulf war. His father also died of ALS while serving a prison sentence in 1989 in his early 50s. Her father has 3 siblings all still living with no signs of ALS. No other signs of long term FALS. Still awaiting info from UPenn about the specific details of his disease. Hoping for info on which gene.
She has a habit of simply accepting only that she has it. And constantly second guesses everything. Hopefully her seeing other peoples opinions on the matter may help.
Thank you,
James