Kristina1
Senior member
- Joined
- Jan 26, 2017
- Messages
- 822
- Reason
- PALS
- Diagnosis
- 03/2017
- Country
- US
- State
- MA
- City
- Grafton
This is mainly a rant.
I'm frustrated by emotional lack of acceptance of this diagnosis. Intellectually I am there, but emotionally I keep torturing myself by over-analyzing everything and thinking up reasons why maybe it could be wrong. Part of it is that I am not disabled by this yet. It's sometimes hard to speak, and my affected hand is stiff and gets tired easily and cannot always open packaging or little things like that. But in general I function quite normally. I've had symptoms for over a year and I find myself thinking surely I would be a lot worse off by now if I was truly dying.
The diagnosis process took me from seeing (separately) an ENT and an Orthopedic hand specialist, to a neurophysiologist for an EMG, to a neurologist, to a neuromusucular neurologist who did a more comprehensive EMG and gave me this diagnosis. Now I'm set to be seen at the ALS clinic in a week and a half. With each doctor I feel like part of me is waiting for them to burst out laughing and say "Gotcha!!!!! Just kidding! How ridiculous, of course you don't have ALS!" But every time it's been "We are concerned about a MND, so we are referring you to..." Now I'm at the last stop and pathetically still hoping the doctor at the ALS clinic will somehow say "Those fools, of course this isn't ALS, can't believe they diagnosed that, it's a simple case of ____." Last week the neuromuscular neurologist told me to cancel my follow ups with the neuromuscular clinic because "The ALS clinic will take care of you from here," and it felt like a punch to the gut. I realized she really doesn't think I'll be going anywhere else. She thinks this is it.
Why can't I stop torturing myself and just accept it? I feel like all I do is set myself up for more disappointment. Every time I google, AGAIN, trying to find some other answer, every time I see the next doctor. Every time I dissect what each doctor told me, word for word, looking for a hidden clue that might mean this is less certain.
It's just crazy. Statistically this should never have happened. I'm a 31 year old woman. I keep getting hung up on that thinking there must be some mistake. But intellectually I am 95% sure the doctors are correct and that I have not been misdiagnosed. It's like having a split personality, being sure it's true but simultaneously expecting to find out it's not.
I'm frustrated by emotional lack of acceptance of this diagnosis. Intellectually I am there, but emotionally I keep torturing myself by over-analyzing everything and thinking up reasons why maybe it could be wrong. Part of it is that I am not disabled by this yet. It's sometimes hard to speak, and my affected hand is stiff and gets tired easily and cannot always open packaging or little things like that. But in general I function quite normally. I've had symptoms for over a year and I find myself thinking surely I would be a lot worse off by now if I was truly dying.
The diagnosis process took me from seeing (separately) an ENT and an Orthopedic hand specialist, to a neurophysiologist for an EMG, to a neurologist, to a neuromusucular neurologist who did a more comprehensive EMG and gave me this diagnosis. Now I'm set to be seen at the ALS clinic in a week and a half. With each doctor I feel like part of me is waiting for them to burst out laughing and say "Gotcha!!!!! Just kidding! How ridiculous, of course you don't have ALS!" But every time it's been "We are concerned about a MND, so we are referring you to..." Now I'm at the last stop and pathetically still hoping the doctor at the ALS clinic will somehow say "Those fools, of course this isn't ALS, can't believe they diagnosed that, it's a simple case of ____." Last week the neuromuscular neurologist told me to cancel my follow ups with the neuromuscular clinic because "The ALS clinic will take care of you from here," and it felt like a punch to the gut. I realized she really doesn't think I'll be going anywhere else. She thinks this is it.
Why can't I stop torturing myself and just accept it? I feel like all I do is set myself up for more disappointment. Every time I google, AGAIN, trying to find some other answer, every time I see the next doctor. Every time I dissect what each doctor told me, word for word, looking for a hidden clue that might mean this is less certain.
It's just crazy. Statistically this should never have happened. I'm a 31 year old woman. I keep getting hung up on that thinking there must be some mistake. But intellectually I am 95% sure the doctors are correct and that I have not been misdiagnosed. It's like having a split personality, being sure it's true but simultaneously expecting to find out it's not.