mindyanajones
08-04-18, 13:28
I wasn't sure where to post this as it's not really a success story, and it's still HA related. I haven't been on this forum long, pretty obviously, but I wanted to document this partly for myself and partly for others who may be helped by the glimmer of hope.
My ALS fears have currently been focused on my tongue and mouth/speech issues. I've, for the past week or so, felt like my tongue has been uncoordinated, unable to speak properly around certain words or sounds, particularly s, as if I'm slowly starting to develop a lisp. Naturally, my brain decided that was the onset of an ALS related slurred speech symptom. Combined with my feeling of having swallowing issues, you can imagine what a state I've been in. Had a complete panic attack at school, crying on the phone to the nurse who works at my doctor's office practically begging her to find a neurologist that would see me sooner than September. (She did because she's an angel, and I still have an appointment to get an EMG and a consult, which I won't be cancelling just yet as I'm not 100% convinced I'm A-OK.)
BUT this morning, as I was driving home from my over night shift, I decided to test something. I also have developed a lower jaw tremor. My teeth are constantly chattering, ranging from very mild and almost imperceptible when I wake up to full on spasms as if I'm freezing cold. I had noticed early last night that if I lower my head as if I'm going to look at the floor, the teeth chattering and jaw tremor lessen. I don't know if it's the result of tense neck muscles that are causing it or just gravity in general, no idea, but looking down helps.
I decided to test that out with my speech. I was singing along to my music with my head tilted down (eyes still on the road!), and my speech... wasn't perfect, but it felt much closer to normal, no major struggles with the letter s or certain combinations of letters. When I got home, talking to my cats, who are obviously much closer to the ground than me, lended the same result.
And I kind of had a breakthrough. If this was an ALS related speech slur, no amount of head tilting is going to fix that. So... if it's not ALS... maybe it is just my tense body screwing up my ability to speak. And this probably sounds really stupid! Anyone else probably could have told me that, but I had to prove it to myself. And maybe that's not the way to go about things. I shouldn't constantly be trying to prove things to myself, but I'll take it for right now. I have gotten to the point where I'm constantly checking my tongue in the mirror for atrophy, convinced a small spot in the middle of my tongue in the shitty lighting of my bathroom is getting deeper. (I don't actually know how atrophy works in ALS and for god's sake nobody tell me.) I'm not saying I'm never going to do that again. I probably will in a couple hours, but for right now, the urge isn't very strong. I don't feel good per se, but I feel... okay. And I'll take okay.
I can feel the anxious thoughts just at the edge of my brain, and I know I could slip right back into this with the snap of my fingers. It legit feels like a game of tug o'war in my head, right now, where my emotional brain wants to rationalize this and twist it into more ALS problems, but I think my logical brain is starting to come back online. And that's a very tiny pinprick of light at the end of a very dark tunnel for me.
My ALS fears have currently been focused on my tongue and mouth/speech issues. I've, for the past week or so, felt like my tongue has been uncoordinated, unable to speak properly around certain words or sounds, particularly s, as if I'm slowly starting to develop a lisp. Naturally, my brain decided that was the onset of an ALS related slurred speech symptom. Combined with my feeling of having swallowing issues, you can imagine what a state I've been in. Had a complete panic attack at school, crying on the phone to the nurse who works at my doctor's office practically begging her to find a neurologist that would see me sooner than September. (She did because she's an angel, and I still have an appointment to get an EMG and a consult, which I won't be cancelling just yet as I'm not 100% convinced I'm A-OK.)
BUT this morning, as I was driving home from my over night shift, I decided to test something. I also have developed a lower jaw tremor. My teeth are constantly chattering, ranging from very mild and almost imperceptible when I wake up to full on spasms as if I'm freezing cold. I had noticed early last night that if I lower my head as if I'm going to look at the floor, the teeth chattering and jaw tremor lessen. I don't know if it's the result of tense neck muscles that are causing it or just gravity in general, no idea, but looking down helps.
I decided to test that out with my speech. I was singing along to my music with my head tilted down (eyes still on the road!), and my speech... wasn't perfect, but it felt much closer to normal, no major struggles with the letter s or certain combinations of letters. When I got home, talking to my cats, who are obviously much closer to the ground than me, lended the same result.
And I kind of had a breakthrough. If this was an ALS related speech slur, no amount of head tilting is going to fix that. So... if it's not ALS... maybe it is just my tense body screwing up my ability to speak. And this probably sounds really stupid! Anyone else probably could have told me that, but I had to prove it to myself. And maybe that's not the way to go about things. I shouldn't constantly be trying to prove things to myself, but I'll take it for right now. I have gotten to the point where I'm constantly checking my tongue in the mirror for atrophy, convinced a small spot in the middle of my tongue in the shitty lighting of my bathroom is getting deeper. (I don't actually know how atrophy works in ALS and for god's sake nobody tell me.) I'm not saying I'm never going to do that again. I probably will in a couple hours, but for right now, the urge isn't very strong. I don't feel good per se, but I feel... okay. And I'll take okay.
I can feel the anxious thoughts just at the edge of my brain, and I know I could slip right back into this with the snap of my fingers. It legit feels like a game of tug o'war in my head, right now, where my emotional brain wants to rationalize this and twist it into more ALS problems, but I think my logical brain is starting to come back online. And that's a very tiny pinprick of light at the end of a very dark tunnel for me.