How did you get over the ALS fear?

[darkside4k]

That's frightening. I'm worried I have ALS coming on via muscle aches even though I'm still able to do everything.

[Sixpack]

That's frightening. I'm worried I have ALS coming on via muscle aches even though I'm still able to do everything.

It is only frightening because you have chosen to make it so.

[Josh1234]

That's frightening. I'm worried I have ALS coming on via muscle aches even though I'm still able to do everything.

I'm not sure what it's gonna take for you to understand that muscle aches are not a sign of ALS. It's like saying "my foot hurts, I'm afraid I have brain cancer."

[GlassPinata]

I'm not sure what it's gonna take for you to understand that muscle aches are not a sign of ALS. It's like saying "my foot hurts, I'm afraid I have brain cancer."

If you have health anxiety (even if it takes a different form, as mine does), you should be able to empathize with what they are feeling. It is REAL! As real as my thinking a swollen lymph node represents cancer. It's real, it's terrifying, it hurts. Let's be kind.

[Josh1234]

It is not a fear I've ever had, remarkably enough. And here I thought I'd had ALL of them. Lol.
Ex-boyfriend's mom suffered from ALS, but it was coming on very slowly, and she was still capable of doing many things.
I guess that's not the kind of thing that scares me, nor Alzheimer's. My fear is cancer (every type) and AIDS.... diseases that allow you to keep your cognitive facilities intact as your body rots around you.
ALS does not scare me.

The mind is not affected in ALS. Patients are, quite literally, prisoners in their own crippled bodies, and lose the ability to speak or even move their head, while their minds are completely normal. That's why it's so terrifying for people.

---------- Post added at 01:55 ---------- Previous post was at 01:52 ----------

If you have health anxiety (even if it takes a different form, as mine does), you should be able to empathize with what they are feeling. It is REAL! As real as my thinking a swollen lymph node represents cancer. It's real, it's terrifying, it hurts. Let's be kind.

16 year health anxiety veteran here. You are doing a disservice to sufferers by not encouraging rationale thought. There are times when it's reasonable to have health anxiety about things, but for God's sakes, take yourself by the hand A LITTLE. A swollen node is reasonable fear, but you cannot just equate any and every symptom to a disease and expect people to be patient for very long. We have answered the same questions and told the same information to darkside4k endlessly, and he/she isn't listening, nor attempting to help themselves.

[nivekc251]

Go to your doctor and tell them all of your worries. All we can really do is try to help you with your anxiety by typing comforting words. Go to your doctor or a neurologist and demand then schedule you an emg on the affected areas on your body. Tell them the anxiety is affecting the quality of your life, and you need reassurance from an experienced professional, but remember what everyone on here has told you once the doctor clears you and you start second guessing him or her. I'm sure your hand is cramping my hamstring is as I type, but anxiety makes a simple cramp seem crazy bad and a symptom of something horrible. Once the doctor clears you see a therapist it truly helps if you practice the exercises. It may not cure your HA but it helps you deal with it better.

[swajj]

What a depressing thread.

Next time OP you might want to put a warning in the title.

None of you people have ALS for goodness sake. Most of you should avoid each other on this forum because you are just enabling each other.

Great post Josh.

[emmegee]

What a depressing thread.

Next time OP you might want to put a warning in the title.

None of you people have ALS for goodness sake. Most of you should avoid each other on this forum because you are just enabling each other.

Great post Josh.

My apologies. One can never predict who might respond and what direction the thread may get directed. Fwiw, as the OP, I have found many of the responses helpful. I was not seeking reassurance regarding my symptoms, but appreciate the kind words of those who have been through a similar situation and their encouraging words on what it took for them to get through it.

[Hancock]

Oof, this thread is a little tense. Figured I'd put in my two cents because at one point I was completely over the fear and just recently spiraled back into it. Maybe this would provide some tips of what NOT to do when you're feeling better.

I suffered from severe als phobia from September of 2015 up until January 2016 due to perceived weakness, muscle twitching, throat symptoms, tremors, and other weird things going on. Of course prior to that I had very minimal, normal anxiety symptoms that had gone somatic and googled and ended up on als. That's when my body went haywire. I went to a doc, said I was fine. Went to a neuro. Said I was fine. Questioned myself daily with strength testing, constantly sought out reassurance from my parents, my fiancée, and anyone who would listen to my incoherent ramblings. Finally got on medication after years of needing it and refusing. After a few weeks on the meds and them being slowly upped, my thoughts began to slow down and I was able to deferentiate the true from the false, my bodily symptoms also lessened, some went away completely and would only return when I had minor spikes in anxiety.

What helped initially was that and educating myself. Relating to people who had the same fears. Learning about the real disease process with neurologist approved information. After a while I completely let it go, lived fear free for 8 months (keep in mind, I was fear free while my fiancées friends father had gotten diagnosed with actual bulbar als).

And alas, I thought myself brace enough and strong enough and got off my meds without proper tapering or doctor consent. I wasn't at a high mg dosage by that point so I thought to hell with it, I'm fine. I was dead wrong. It's been three weeks since being off my meds and I crashed hard. The obsessions began to come back, little by little at first and then full force after I saw those three little words tethered to a facebook post. I lost it within the day. Back to body checking, googling, strength testing, and ruthless anxiety. Back to obsessing with the thought of dying young and crippled. Back to the selfishness and fear that locked me up a year prior. Back to insane twitching and perceived weakness on my right side. Back to waiting for the worst and wanting constant reassurance. Back to not living my life correctly because anxiety has once again hijacked it, and you know what? I let it.

I didn't even try to put up a fight.

So my advice to anyone and everyone who faces the als fear monster, when you get better, don't go back. Don't think about it. Don't even question it unless you fall down your stairs flat on your face. It doesn't exist. It's not in your body. It's in your mind. And no amount of neurologists, als specialists, anxious forum surfers, als patients, family members, spouses, emgs, or other medical tests will reassure you if you will not let the thought go.

And believe me when I say it's not an easy one to shake. I empathize. But we have to root down our fears to extinguish them. I know my fear is kicked back up because I just got a condo with my fiancée (bought), just got a good job at a bank, got out of medicine which I still don't know if it was the right decision but I can't go back now, and we're talking about starting a family. Of course my brain would whisper to me, as I flush my meds down the toilet, "well wouldn't it be excellent timing, Hancock, for you to be crippled and drying right now?"

Address the fear. Not the symptoms. Even people who have been diagnosed with als will ask why? And they'll try to go as far back as possible and relate everything to their disease. Isn't that what we do with anxiety and hypochondria? We try to go as far back as we can and try to figure out why we're so messed up? Everyone wants answers, sometimes they don't exist. We have to accept the state we're in to move on. We have to accept that yes, our minds can and will do this to us if we don't keep them on a tight leash. People with normal functioning brains might daydream about what they're going to do in a year, what vacations they'll go on, if they'll make a career change. Our brains are NOT NORMAL. There is an imbalance somewhere. We sit and daydream about kissing our loved ones goodbye one last time before we go. We daydream about sitting in front of the tv with a paralyzed body waiting for death. We think about all the things we can lose on a daily basis which is everything, unfortunately.

So why don't we hold tight to what we have now? That was my initial cure with the help of medication. I lived like I was dying, and I was happy because I wasn't focused on the what ifs down the line.

Someone posted earlier about control being a big factor in hypochondria and anxiety. That's so true. Everyone with anxiety and OCD wants control. We crave it. We keep the illusion that we have it. And when our beautiful, brilliant, but very broken minds realize we don't have it, we lose it. We obsess over it. We mourn the loss before it ever becomes a reality in our life.

This existence will continue to stay terrifying. But it will also continue to stay beautiful. The best quote I ever heard was "the only reason earth feels like hell is because of our expectation that it should feel like heaven".

We will hurt. We will ache. We will tremor and shake. Our bodies will lie to us, so will our minds. Eventually we all will get ill with something or another and chances are it won't be what we're so afraid of. Regardless suffering will come. That's the harsh reality. We have to understand that we won't live forever and that all we can do is utilize the time we have and be happy with what we got. Feel me peeps?

I feel for all of you. Our struggle isn't easy. No ones is. But we owe it to ourselves to try to lessen our expectations and live more in the moment. I believe that's the only cure for this incessant mental illness.

[ww1399]

ALS is extremely rare and it progresses quickly. That's how I got over it. I finally told myself that I'm not one in a million and if my symptoms aren't getting progressively worse, I don't have ALS.