Natasha12345
New member
- Joined
- May 9, 2020
- Messages
- 4
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- MS
- City
- Lumberton
Hello,
I will try to make this quick, as I have much respect for PALS and caregivers, family members. My father began showing symptoms of ALS in 2005 at age 50, and was diagnosed with ALS in 2007, and passed in 2010. Both of his parents have many brothers and sisters who generally lived to older age, many who are still living now. No known history of ALS or neurological disorder on either side.
He has two sisters who are still living, his mother is in her 80s, his father passed in his 70s due to bladder cancer. No history of dementia that we know of either. My fathers disease started in arms and progressed, NEVER showing any problems with eating, swallowing, talking, ect.
At that time, we were told his case was “sporadic”, no known cause. I never questioned this fact until recently. I was going through a rather tough time in my pregnancy beginning first of February and was having some extreme anxiety. At this time, I started having muscle twitches in knees and feet, then randomly all over. Sometimes my calves will feel like they tense up and then relax, and also I’m having jerking episodes when trying to fall asleep.
Ive been to neurologist and have been seeing psychologist. Neurologist is not concerned, said EMG did not suggest ALS, thinks it’s all anxiety related. Asked about family history, ect and pretty much blew me off after that saying that I don’t have anything to worry about.
However, I do know after reading several studies that I am in fact at increased risk due to my father having it (1:100). I have also read that a younger age of onset and strictly LMN symptoms only generally point to a greater chance of genetic mutation/ or genetic issue mainly with the c9 gene. I have one child already and am pregnant now, and I’m very concerned about the possibility of me carrying a mutated gene that happened first in my father and now I will develop the disease and risk passing it to my children. Is genetic testing even a possibility if my father has already passed. Any insight anyone would have have on these issues would be greatly appreciated.
I will try to make this quick, as I have much respect for PALS and caregivers, family members. My father began showing symptoms of ALS in 2005 at age 50, and was diagnosed with ALS in 2007, and passed in 2010. Both of his parents have many brothers and sisters who generally lived to older age, many who are still living now. No known history of ALS or neurological disorder on either side.
He has two sisters who are still living, his mother is in her 80s, his father passed in his 70s due to bladder cancer. No history of dementia that we know of either. My fathers disease started in arms and progressed, NEVER showing any problems with eating, swallowing, talking, ect.
At that time, we were told his case was “sporadic”, no known cause. I never questioned this fact until recently. I was going through a rather tough time in my pregnancy beginning first of February and was having some extreme anxiety. At this time, I started having muscle twitches in knees and feet, then randomly all over. Sometimes my calves will feel like they tense up and then relax, and also I’m having jerking episodes when trying to fall asleep.
Ive been to neurologist and have been seeing psychologist. Neurologist is not concerned, said EMG did not suggest ALS, thinks it’s all anxiety related. Asked about family history, ect and pretty much blew me off after that saying that I don’t have anything to worry about.
However, I do know after reading several studies that I am in fact at increased risk due to my father having it (1:100). I have also read that a younger age of onset and strictly LMN symptoms only generally point to a greater chance of genetic mutation/ or genetic issue mainly with the c9 gene. I have one child already and am pregnant now, and I’m very concerned about the possibility of me carrying a mutated gene that happened first in my father and now I will develop the disease and risk passing it to my children. Is genetic testing even a possibility if my father has already passed. Any insight anyone would have have on these issues would be greatly appreciated.
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