- Joined
- Jan 22, 2023
- Messages
- 15
- Reason
- CALS
- Diagnosis
- 01/2023
- Country
- US
- State
- VA
- City
- Arlington
I’m new to this forum as my best friend was just diagnosed a few days ago. I don’t even know if I could technically be considered a caregiver now as he is still very independent. But I am committed to helping him through this all the way, and have already started helping him with research, getting on disability benefits etc.
I am of course feeling all the emotions one feels with a diagnosis like this in a loved one. But one thing that I haven’t read much about (I’ve been reading about ALS nonstop for days, of course) is the huge amount of guilt and regret that I did not push him harder to seek medical attention earlier.
He has tested positive for the C9 gene, and his condition began with losing the use of his right hand about 2 1/2 years ago. He didn’t seek medical care immediately, and when he did it was with a hand surgeon who diagnosed him with ulnar neuropathy and referred him to a neurologist.
He didn’t see a neurologist, though, and said later it was because he didn’t have health insurance.
The condition seemed to stay pretty stable for about a year and a half - the hand got a little worse, but neither of us had any clue that the problem extended beyond his hand.
But in early 2022 he started having problems with his right leg too - but didn’t tell me. He did move forward with getting health insurance, but everything took at long time, and it was September 2022 by the time he got in to see a neurologist. Then the testing took months. But things seemed to accelerate this year, and by this time he had lost over 30 pounds of muscle and was beginning to look visibly disabled due to the muscle loss and difficulty standing fully upright. (His testing showed abnormalities in all four extremities even though his left side functioning is still good.)
For the past 8 months or so - since I first realized this was more serious that I had thought - I have been having huge regrets that I did not just bundle him in the car back in 2020 and insist he see a neurologist, and pay for the visit and any subsequent testing. I had savings and could have done that. And of course, after the diagnosis I feel this even more strongly.
I know I can’t go back and change the past, and that the best thing to do now if focus on how I can help him materially and psychologically as we move forward. But I am still tormented with “if we could have gotten him on medication for ALS in 2020, would the decline he experienced this year have been delayed for many years?”
I realize that there is no way of knowing the answer to that question. But, I was curious about whether other caregivers and loved ones - or PALS, for that matter - have had similiar feelings or experiences in relation to delayed diagnosis.
Any thoughts or stories you care to share would be most welcome.
I am of course feeling all the emotions one feels with a diagnosis like this in a loved one. But one thing that I haven’t read much about (I’ve been reading about ALS nonstop for days, of course) is the huge amount of guilt and regret that I did not push him harder to seek medical attention earlier.
He has tested positive for the C9 gene, and his condition began with losing the use of his right hand about 2 1/2 years ago. He didn’t seek medical care immediately, and when he did it was with a hand surgeon who diagnosed him with ulnar neuropathy and referred him to a neurologist.
He didn’t see a neurologist, though, and said later it was because he didn’t have health insurance.
The condition seemed to stay pretty stable for about a year and a half - the hand got a little worse, but neither of us had any clue that the problem extended beyond his hand.
But in early 2022 he started having problems with his right leg too - but didn’t tell me. He did move forward with getting health insurance, but everything took at long time, and it was September 2022 by the time he got in to see a neurologist. Then the testing took months. But things seemed to accelerate this year, and by this time he had lost over 30 pounds of muscle and was beginning to look visibly disabled due to the muscle loss and difficulty standing fully upright. (His testing showed abnormalities in all four extremities even though his left side functioning is still good.)
For the past 8 months or so - since I first realized this was more serious that I had thought - I have been having huge regrets that I did not just bundle him in the car back in 2020 and insist he see a neurologist, and pay for the visit and any subsequent testing. I had savings and could have done that. And of course, after the diagnosis I feel this even more strongly.
I know I can’t go back and change the past, and that the best thing to do now if focus on how I can help him materially and psychologically as we move forward. But I am still tormented with “if we could have gotten him on medication for ALS in 2020, would the decline he experienced this year have been delayed for many years?”
I realize that there is no way of knowing the answer to that question. But, I was curious about whether other caregivers and loved ones - or PALS, for that matter - have had similiar feelings or experiences in relation to delayed diagnosis.
Any thoughts or stories you care to share would be most welcome.
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