abenn
New member
- Joined
- May 29, 2019
- Messages
- 2
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- MI
- City
- Howell
Hello all. My mother passed away from ALS in 2010 after an almost 13 year battle. She was the only person in her family to have the disease that we know of. Nonetheless, she still did insist on having genetic testing done after her diagnosis which resulted in no familial findings and supported their suspicions that it was SALS. However, since she passed in 2010 prior to the discovery of some of these other, more common genes causing FALS, I can’t help but wonder if we don’t have the full picture. Neither of my mother’s parents had any known ALS symptoms, but her father did have Alzheimer’s Disease late in life. Both lived quite long lives.
She had 3 siblings that all passed away fairly young of other causes (all around the age of 60). One sister had battled with Schizophrenia and and her other sister eventually developed some other sort of mental illness issues that effected her behavior, but I am not sure if she ever got a diagnosis due to not seeking treatment and eventually passing away from respiratory issues from long term smoking. My mother’s brother was estranged from the family but eventually developed some sort of neurological disease that was apparently determined to not be ALS related.
After his passing, I did order a copy of his death certificate to see if that would provide any answers, but it listed only unrelated issues and cancer as the cause of death. His neurological issues did bother my mother when she was alive, and she was somehow able to convince her doctors and him to give her some information on his condition, and her determination was that it was more of a self induced neurological issue - he struggled with drug and alcohol addiction.
My cousins on that side are in their late 40s for the most part and have no known issues. But, as you can see, I go through spurts of driving myself crazy with the what if’s. We certainly don’t have a CLEAR family history, however, some of these other loosely linked diseases that did present in our family make me wonder if there could be a more genetic cause. Is it worth digging into more genetic testing for the off her genes discovered after my mother’s death?
She had 3 siblings that all passed away fairly young of other causes (all around the age of 60). One sister had battled with Schizophrenia and and her other sister eventually developed some other sort of mental illness issues that effected her behavior, but I am not sure if she ever got a diagnosis due to not seeking treatment and eventually passing away from respiratory issues from long term smoking. My mother’s brother was estranged from the family but eventually developed some sort of neurological disease that was apparently determined to not be ALS related.
After his passing, I did order a copy of his death certificate to see if that would provide any answers, but it listed only unrelated issues and cancer as the cause of death. His neurological issues did bother my mother when she was alive, and she was somehow able to convince her doctors and him to give her some information on his condition, and her determination was that it was more of a self induced neurological issue - he struggled with drug and alcohol addiction.
My cousins on that side are in their late 40s for the most part and have no known issues. But, as you can see, I go through spurts of driving myself crazy with the what if’s. We certainly don’t have a CLEAR family history, however, some of these other loosely linked diseases that did present in our family make me wonder if there could be a more genetic cause. Is it worth digging into more genetic testing for the off her genes discovered after my mother’s death?
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