Fear of ALS consuming my life.

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Hybrid Theory

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Hello. I've had symptoms since beginning of 2015 that I've feared are related to ALS. It all began when I went to bed before waking up to work and I woke up during the night to a horrible tremor that appeared trough out my whole body. The same tremor still companies me to this day and it's basically like this: when I lift for an example my hands up and then slowly lower the, down, my joint areas start to jitter that makes even my voice if I speak at the same time. This also happens when I lift my legs and then lower them down or if I lower my whole upper body to reach my legs.

Not only that, but at the same time when these tremors started, I also started to get these muscle twitches pretty much around my whole body that appear especially during rest or sitting down. After those symptoms came I also noticed that my legs got really weak while I was riding my bicycle to work. A lot of other symptoms have also started to appear slowly like mumbling speech, excessive saliva and now I get reflux more than ever now.

Back in late 2018 I got to an brain MRI to rule out a brain tumor, but the results came back negative and there wasn't even atrophy in the brains or anything else that could be a sing of a tumor or a stroke. I got rid of the fear for a whole year until I relapsed now, because I got really dizzy few weeks back and now I'm suffering from breathing problems while lying down and that scares me. I went to the doctor and all he said it was caused by a stiff neck. I've now noticed that my feet start to hurt now even when I dance and I am completely lost now in the fear that I have ALS.

Doctors keep saying there's nothing wrong with you that it's "just an essential tremor" or anxiety that is causing me to have these symptoms, but I can admit, I've read plenty of stories about people experiencing similar symptoms as me and for a while; doctor telling them that everything is fine, but then later on being further tested and then getting the final diagnosis as ALS. And now that I've read that it can affect diaphragm in early stages too,

I feel even more scared and depressed since. I've now also gotten breathing problems while lying down and food comes back up even without having acid reflux. I also accidentally inhale saliva sometimes as well. I have a real problem for not being able to trust my doctors and I don't know witch way to turn anymore. It's affecting my mental health and I keep having self destructive thoughts. These thoughts come back time to time, because I feel like I want to be in control of my fate. I recently visited a doctor who sent a request to a neurologist, but all I got as a reply was that "there is no need for an EMG".

I've lost my direction. I don't know what to do anymore. Somebody, please help.
 
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lgelb

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If you have self-destructive thoughts, please see a counselor on line or by phone. You can make an appointment tomorrow. There are many options. No one should face those thoughts alone. That is the first step in all this, because you can't think straight when you are in a dark place.

Often talking about your fears and anxieties can help you get back to a direction that leads somewhere, narrowing down what physical issues should be pursued, and what is possibly attributable to anxiety. It's not at all unusual for someone to have a "normal variant" that their mind finds it hard to accept. And, as you know, the mind is very powerful. A counselor can also help you bridge the gap between "not trusting your doctors" and any further evaluation that should take place.

Meanwhile, I would also suggest really looking at your sleep, nutrition, hydration and exercise as if you were advising a friend. These have a huge influence on how you feel.

If it is going to take an EMG to reassure you about ALS, which I don't think you have, I'm sure you can get one. But I would suggest starting with counseling to get moving in that positive direction that will enable you to accept the results and keep moving.

Best,
Laurie
 
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