I've been reading the forums, specifically the DIHALS threads, for 15 months now. My ALS scare lasted 9 months and nearly shut my life down completely - but I've rarely ever thought about developing ALS myself over the past 6 months. I am an actively practicing Internal Medicine MD. I made a small donation to the forums today to say thank you for all the strength and support I've drawn from reading the stories of all the brave souls who have passed through these forums, and the reassurance provided by so many others.
This is my first post.
I believe ALS phobia should be its own diagnosis. I believe it is incredibly unique in the vast, crippling world of health anxiety disorders. The gradual onset and variety of initial symptoms creates a wave of uncertainty, onto which any human being with dreams and loved ones can surf endlessly. I had never been diagnosed with anxiety, depression, or any other mental health disorder prior to developing my fasciculations. It can happen to anyone.
I believe a negative EMG/NCS is not a cure for ALS phobia. I had one performed 6 months after my initial symptoms. I saw the leading expert on ALS in the state of Oregon, who reassured me completely. I continued to panic for three months thereafter, and I know for many this can last for years.
I believe one of the worst things you can do when fearing ALS is subject yourself to self-imposed strength tests. Finger manipulation tests. Toe strength tests. Running and weight-lifting and balancing and agility tests. Tongue manipulation tests. Tongue viewing tests in the mirror. The uncertainty over what the result means only deepens your anxiety, and the relief that comes with occasionally performing these tests adequately is so fleeting, it's like an IV narcotic. These tests can become addictive. And the inevitable muscle soreness pain and perceived weakness that follows will lead only to more anxiety, and more tests. It is a circle of hell that Dante forgot, but you will not. Even as a physician, trained to perform these tests on others and accurately interpret the results, when I performed them on myself I truly had no idea what they meant. The first step for my recovery was committing to stopping the self-testing.
I believe the information on the internet about initial symptom development in ALS is incredibly misleading. During my crisis, I dug deeply into all the medical literature available on initial symptoms in ALS. I knew the epidemiology cold. The truth is, there's still a lot we don't know. The anecdotal experience of the ALS specialist I saw did not consistently line up with the numbers I painstakingly gleaned from my research. Fasciculations or weakness first? Weakness in one limb or multiple first? Tongue and limb or just tongue for bulbar onset? Fasciculations without weakness for how long would rule out the diagnosis? 2 weeks? 6 months? I could regurgitate my learnings here, but I've come to believe they don't matter. Facts are not a cure for ALS phobia.
So what is the cure for ALS phobia? Because I believe there is one. As with many mental health ailments, it requires a personal investment into multiple modalities:
1. You need a supportive listener. Not someone who will tell you "knock it off, you don't have ALS, snap out of it." Someone with whom you can verbally share your symptoms and perceived symptoms. Someone who can listen compassionately and gently remind you you're ok today. Today you can still eat, and drink, and walk, and talk, even if some of those things feel difficult to you. This may be your doctor, your spouse, your best friend, your counselor, or yes, the wonderfully supportive reassuring moderators on these boards.
2. Ideally, you need a trained psychiatrist. That person can be #1, but it's best if they are additive to #1. Someone who can prescribe medication if necessary.
3. You need a primary care doctor. You won't trust them, but you need one anyway. There are many causes of fasciculations and weakness that may need to be investigated. You don't necessarily need a neurologist or an ALS specialist, but if your PCP thinks you might benefit from seeing one, then follow that path.
4. You need exercise. Not self-testing or exhaustion exercise, but genuinely enjoyable exercise.
5. You need time.
So that leaves us with the big elephant question in the room: "How do I know it's ALS phobia and not ALS?" Well, many deep dark months and ALS epidemiologic readings later, I can definitively say you won't. But if you follow the steps above and treat it like ALS phobia, I guarantee you that whatever the result, you'll be setting yourself up to succeed.
The single most reassuring thing I read over and over on these forums was not the stories of those who thought they had ALS and ultimately didn't, or those who had symptoms like mine and escaped a diagnosis, or the endless pages of facts. It was the posts from those who DO HAVE ALS. 100% of the time they came from a voice of strength. From someone who had learned to accept, had learned to maximize what they had, and seemed to have a fantastic quality of life. A quality of life that - paradoxical as it may seem - was not shared by those living with the phobia. I believe we all die eventually. And when we are face to face with our eventual fate, we are genetically prepared for it. That strength is powerful, and it's within all of us. So many on these forums who have passed away from ALS helped me see that. And that's a gift I can never repay.
Thank you again to these amazing forums, and all the wonderful people who keep them alive.
This is my first post.
I believe ALS phobia should be its own diagnosis. I believe it is incredibly unique in the vast, crippling world of health anxiety disorders. The gradual onset and variety of initial symptoms creates a wave of uncertainty, onto which any human being with dreams and loved ones can surf endlessly. I had never been diagnosed with anxiety, depression, or any other mental health disorder prior to developing my fasciculations. It can happen to anyone.
I believe a negative EMG/NCS is not a cure for ALS phobia. I had one performed 6 months after my initial symptoms. I saw the leading expert on ALS in the state of Oregon, who reassured me completely. I continued to panic for three months thereafter, and I know for many this can last for years.
I believe one of the worst things you can do when fearing ALS is subject yourself to self-imposed strength tests. Finger manipulation tests. Toe strength tests. Running and weight-lifting and balancing and agility tests. Tongue manipulation tests. Tongue viewing tests in the mirror. The uncertainty over what the result means only deepens your anxiety, and the relief that comes with occasionally performing these tests adequately is so fleeting, it's like an IV narcotic. These tests can become addictive. And the inevitable muscle soreness pain and perceived weakness that follows will lead only to more anxiety, and more tests. It is a circle of hell that Dante forgot, but you will not. Even as a physician, trained to perform these tests on others and accurately interpret the results, when I performed them on myself I truly had no idea what they meant. The first step for my recovery was committing to stopping the self-testing.
I believe the information on the internet about initial symptom development in ALS is incredibly misleading. During my crisis, I dug deeply into all the medical literature available on initial symptoms in ALS. I knew the epidemiology cold. The truth is, there's still a lot we don't know. The anecdotal experience of the ALS specialist I saw did not consistently line up with the numbers I painstakingly gleaned from my research. Fasciculations or weakness first? Weakness in one limb or multiple first? Tongue and limb or just tongue for bulbar onset? Fasciculations without weakness for how long would rule out the diagnosis? 2 weeks? 6 months? I could regurgitate my learnings here, but I've come to believe they don't matter. Facts are not a cure for ALS phobia.
So what is the cure for ALS phobia? Because I believe there is one. As with many mental health ailments, it requires a personal investment into multiple modalities:
1. You need a supportive listener. Not someone who will tell you "knock it off, you don't have ALS, snap out of it." Someone with whom you can verbally share your symptoms and perceived symptoms. Someone who can listen compassionately and gently remind you you're ok today. Today you can still eat, and drink, and walk, and talk, even if some of those things feel difficult to you. This may be your doctor, your spouse, your best friend, your counselor, or yes, the wonderfully supportive reassuring moderators on these boards.
2. Ideally, you need a trained psychiatrist. That person can be #1, but it's best if they are additive to #1. Someone who can prescribe medication if necessary.
3. You need a primary care doctor. You won't trust them, but you need one anyway. There are many causes of fasciculations and weakness that may need to be investigated. You don't necessarily need a neurologist or an ALS specialist, but if your PCP thinks you might benefit from seeing one, then follow that path.
4. You need exercise. Not self-testing or exhaustion exercise, but genuinely enjoyable exercise.
5. You need time.
So that leaves us with the big elephant question in the room: "How do I know it's ALS phobia and not ALS?" Well, many deep dark months and ALS epidemiologic readings later, I can definitively say you won't. But if you follow the steps above and treat it like ALS phobia, I guarantee you that whatever the result, you'll be setting yourself up to succeed.
The single most reassuring thing I read over and over on these forums was not the stories of those who thought they had ALS and ultimately didn't, or those who had symptoms like mine and escaped a diagnosis, or the endless pages of facts. It was the posts from those who DO HAVE ALS. 100% of the time they came from a voice of strength. From someone who had learned to accept, had learned to maximize what they had, and seemed to have a fantastic quality of life. A quality of life that - paradoxical as it may seem - was not shared by those living with the phobia. I believe we all die eventually. And when we are face to face with our eventual fate, we are genetically prepared for it. That strength is powerful, and it's within all of us. So many on these forums who have passed away from ALS helped me see that. And that's a gift I can never repay.
Thank you again to these amazing forums, and all the wonderful people who keep them alive.
