halfin
Senior member
- Joined
- Jun 29, 2009
- Messages
- 540
- Reason
- PALS
- Diagnosis
- 08/2009
- Country
- US
- State
- CA
- City
- Santa Barbara
I hope nothing I say will be taken as disrespectful to the many people here with ALS who face very difficult and challenging situations every day. But I need to vent a little, I am very confused and upset about my situation.
I was diagnosed with ALS August 4, at the UCLA neuromuscular clinic, which largely specializes in this and related conditions. So I presume they know what they are doing. I also reviewed the diagnosis with my personal neurologist here in town, someone I went to college with and know is very smart, and he agreed that it seemed correct based on my symptoms and test results.
But I still can't believe I have it. This is not just denial or refusal to face facts. I've read so many stories here about how people are when they are diagnosed, and I've never seen anyone like me. I just got back from an 8 mile run, and I feel great. I ran 12 last weekend, and I'm doing the Disneyland Half Marathon next Sunday. Yet my diagnosis was in large part because of the EMG results in my legs! They showed fibrillations, "giant" units, other effects which weren't there a few months ago, supposedly indicating a progressive process of nerve death. So my legs are supposedly dying, yet I am running 10+ miles on them. Does that make sense?
Now my ALS is bulbar onset. The first thing I noticed, in May, was that my speech suddenly became sluggish and slurring. My voice had also gradually been getting weaker and hoarser, my wife had been noticing that for a few months. So I saw the doctor, then the neurologist, and ran through the whole testing gamut that everyone here is familiar with. They also found, and I noticed too, a little bit of hand weakness. Eventually my voice, plus some dirty EMG readings in my arms and the progressive worsening of the EMGs in my legs, led to the diagnosis.
So here's the problem. My voice is what sent me to the doctor - but nobody except my wife and me can tell I'm having a problem! Everybody else thinks I sound pretty much fine. And the quality of my speech fluctuates a great deal. Last week I was at a conference and had to do a lot of talking, and it didn't sound right. I felt pretty down, with the ALS diagnosis and now I felt like I wasn't speaking well (but again, nobody seemed to notice). But this week, my speech has been better, almost normal. I don't think that's supposed to happen with ALS. If my speech was bad because of nerve death last week, the nerves didn't just spring back to life this week. I wonder if other people find their speech quality changing noticeably from day to day.
My hand weakness is another weird thing. Last year I had an episode where my left thumb tip went numb, and I also had weakness in my left biceps. I saw the neurologist, had an MRI, and they decided it might be arthritis in my spine compressing the nerve. I had some physical therapy and stopped doing my upper body exercises, and it seemed to get better. Now my finger extensor muscles are found to be weak, and my hand feels "funny" when I try to write with a pen. It's hard to describe, but the muscles in my hands feel kind of ticklish and I have trouble controlling the pen. I don't know what it means, but from what I understand, ALS does not cause changes to the sensory nerves, just motor nerves. So I don't think ALS could make my hands feel funny, and that makes me wonder if it is just my spinal cord arthritis acting up that is causing the hand weakness, not ALS.
Anyway, the point is, to me, my symptoms just don't match up with how I hear other people are at the time of their ALS diagnosis. Furthermore, I haven't gotten noticeably worse in the months since I first noticed problems. Sometimes when my speech is bad I feel like it's getting worse, but then I have good days as I have recently, and I realize that it really hasn't changed. ALS should be progressing.
I have tried to accept the diagnosis, to envision my future as this disease progresses. I imagine myself in a wheelchair, unable to move, unable to speak; feeding with a tube, breathing with a machine. I just can't do it. It's like imagining myself elected President. It is a mental image with no sense of reality to it. I am a healthy person, way above average in health in fact. Yes, a few problems have cropped up, some things are not working as well as they used to, but that is to be expected in middle age.
I don't know at this point if it would make sense to pursue yet another neurological opinion, or to simply go on with my life and wait for the ALS clinic doctors to decide that they've made a mistake (or, admittedly, for ALS symptoms to appear and become worse). I think in the end, all that matters is how I will be feeling in a few months or a few years. At this point I am inclined just to put this diagnosis behind me and assume that everything will be fine.
Again, I certainly hope that what I have written here does not come across as boastful or as attempting to put myself above people who are diagnosed with very real and troubling health problems. My heart goes out to all PALS, their families and caregivers. The many stories I have read on these forums are inspirational, testaments to the strength and courage of the human spirit. I just can't believe that I am on that same path.
Just writing out my doubts like this has been helpful, I feel better putting it down in text form. Thank you very much for providing a forum full of supportive people helping each other get through such a heartbreaking illness.
I was diagnosed with ALS August 4, at the UCLA neuromuscular clinic, which largely specializes in this and related conditions. So I presume they know what they are doing. I also reviewed the diagnosis with my personal neurologist here in town, someone I went to college with and know is very smart, and he agreed that it seemed correct based on my symptoms and test results.
But I still can't believe I have it. This is not just denial or refusal to face facts. I've read so many stories here about how people are when they are diagnosed, and I've never seen anyone like me. I just got back from an 8 mile run, and I feel great. I ran 12 last weekend, and I'm doing the Disneyland Half Marathon next Sunday. Yet my diagnosis was in large part because of the EMG results in my legs! They showed fibrillations, "giant" units, other effects which weren't there a few months ago, supposedly indicating a progressive process of nerve death. So my legs are supposedly dying, yet I am running 10+ miles on them. Does that make sense?
Now my ALS is bulbar onset. The first thing I noticed, in May, was that my speech suddenly became sluggish and slurring. My voice had also gradually been getting weaker and hoarser, my wife had been noticing that for a few months. So I saw the doctor, then the neurologist, and ran through the whole testing gamut that everyone here is familiar with. They also found, and I noticed too, a little bit of hand weakness. Eventually my voice, plus some dirty EMG readings in my arms and the progressive worsening of the EMGs in my legs, led to the diagnosis.
So here's the problem. My voice is what sent me to the doctor - but nobody except my wife and me can tell I'm having a problem! Everybody else thinks I sound pretty much fine. And the quality of my speech fluctuates a great deal. Last week I was at a conference and had to do a lot of talking, and it didn't sound right. I felt pretty down, with the ALS diagnosis and now I felt like I wasn't speaking well (but again, nobody seemed to notice). But this week, my speech has been better, almost normal. I don't think that's supposed to happen with ALS. If my speech was bad because of nerve death last week, the nerves didn't just spring back to life this week. I wonder if other people find their speech quality changing noticeably from day to day.
My hand weakness is another weird thing. Last year I had an episode where my left thumb tip went numb, and I also had weakness in my left biceps. I saw the neurologist, had an MRI, and they decided it might be arthritis in my spine compressing the nerve. I had some physical therapy and stopped doing my upper body exercises, and it seemed to get better. Now my finger extensor muscles are found to be weak, and my hand feels "funny" when I try to write with a pen. It's hard to describe, but the muscles in my hands feel kind of ticklish and I have trouble controlling the pen. I don't know what it means, but from what I understand, ALS does not cause changes to the sensory nerves, just motor nerves. So I don't think ALS could make my hands feel funny, and that makes me wonder if it is just my spinal cord arthritis acting up that is causing the hand weakness, not ALS.
Anyway, the point is, to me, my symptoms just don't match up with how I hear other people are at the time of their ALS diagnosis. Furthermore, I haven't gotten noticeably worse in the months since I first noticed problems. Sometimes when my speech is bad I feel like it's getting worse, but then I have good days as I have recently, and I realize that it really hasn't changed. ALS should be progressing.
I have tried to accept the diagnosis, to envision my future as this disease progresses. I imagine myself in a wheelchair, unable to move, unable to speak; feeding with a tube, breathing with a machine. I just can't do it. It's like imagining myself elected President. It is a mental image with no sense of reality to it. I am a healthy person, way above average in health in fact. Yes, a few problems have cropped up, some things are not working as well as they used to, but that is to be expected in middle age.
I don't know at this point if it would make sense to pursue yet another neurological opinion, or to simply go on with my life and wait for the ALS clinic doctors to decide that they've made a mistake (or, admittedly, for ALS symptoms to appear and become worse). I think in the end, all that matters is how I will be feeling in a few months or a few years. At this point I am inclined just to put this diagnosis behind me and assume that everything will be fine.
Again, I certainly hope that what I have written here does not come across as boastful or as attempting to put myself above people who are diagnosed with very real and troubling health problems. My heart goes out to all PALS, their families and caregivers. The many stories I have read on these forums are inspirational, testaments to the strength and courage of the human spirit. I just can't believe that I am on that same path.
Just writing out my doubts like this has been helpful, I feel better putting it down in text form. Thank you very much for providing a forum full of supportive people helping each other get through such a heartbreaking illness.