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Fear of Als is consuming me

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Old 04-17-2016, 05:58 AM   #1
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megustapunkrock HB User
Fear of Als is consuming me

So I am 28 and weigh 270 lbs which is important to know as when I went with my concerns of Als to a doctor last year he just laughed me off and said I looked too "healthy" to have als. Then I brought my tongue twitching to the hospital and my own family doctor and they just wrote it off, this was a year ago. So my tongue twitches when I stick it it or shakes, I don't feel it and it's really shaky now if I flex my tongue a bit it stops a lot of the trembling. When at rest in my mouth there is still some shakiness sepficically on the left side. I can't make it up, it is there and visable and it scares me. Stupid me a year ago was reading about als went to look at my tongue to see what mine looked like and so it started. Now I had never looked at my tongue before so I have no idea how long it had been happemedimg for. What sparked my fear all over is I was at the dentist and he said open your mouth wider you have a wild tongue. I'm scared guys I have two kids to live for.

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Old 09-19-2016, 06:07 AM   #2
Join Date: Sep 2016
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Cerval1 HB User
Re: Fear of Als is consuming me

Hey I have too been scared to death this past week thinking I have als. It all started with some arm pains on both sides and weakness in them. Since then My anxiety has spiked and I haven't been able to sleep in a couple of days. I did get a blood/breathing/urine test done on Friday so I'm hoping something comes back from those. The sleep I do get I have dreams in which I have als. I'm so sacred and yet everyone one I talk too thinks I'm crazy.

Last edited by Cerval1; 09-19-2016 at 06:09 AM.

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Old 09-20-2016, 03:44 AM   #3
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Fear of Als is consuming me

There is a test for ALS which can be performed and ALS can be ruled out. Its one of the diseaeses they can test for...

You would have more symptoms than a twitchy toungue with ALS. This is your imagination running away with you! Go back to your primary doctor for a physical and insist on having blood work done. When nothing comes back out of the ordinary, you will know that you are okay...

Good luck!
RRMS- dx 05

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Old 12-14-2016, 11:03 PM   #4
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threelittlbirds HB User
Re: Fear of Als is consuming me

@megustapunkrock: It's been awhile since your original post so hopefully this message finds you well. I've become sort of an expert on ALS having gone through a terrible scare myself that lasted almost a full year and involved multiple visits to different neurologists. So let me put your mind to rest -- you do not have ALS! There are several very strong reasons why.

1. You've been experiencing tongue symptoms for more than a year. As MSNik noted, if you had ALS, other symptoms would have developed by now. ALS is a fast moving disease. More symptoms would develop that are unmistakable. Since you don't have other symptoms, I'm 100% confident you do not have ALS. I was told this by one of the leading experts on ALS in the world -- Dr. Miller of the Forbes Norris ALS Research Center in San Francisco. He literally wrote the book on diagnosing ALS (go ahead, Google it if you don't believe me )

2. ALS overwhelming occurs in people over the age of 60. The odds of getting it at 28 are extremely extremely rare.

3. When I stick out my tongue, it shakes like crazy. In fact, if I look at my tongue in the mirror, it's always moving. Those movements are involuntary and perfectly normal. One frustrating part of health anxiety is that you become hyperaware of what's going on in your body and often mistake perfectly normal sensations for something bad.

4. My muscles twitch all the time. All over my body. My calves twitch. My forearms twitch. My neck muscles twitch. The twitching started in my mid-20s. It happens all the time. I learned to ignore them. There is a condition called BFS (benign fasciculation syndrome) that inflicts many people. It's called BENIGN because it's totally harmless. If you are interested in learning more, there is a whole forum devoted to it with hundreds of posts from people who suffer from BFS and misinterpreted their symptoms as ALS.


@Cerval1: Arm pains are not a symptom of ALS. ALS is a non-sensory disease -- meaning that you don't get pain from it. It also progresses asymmetrically meaning that symptoms would start on one side -- not both sides. So your symptoms don't sound like ALS at all.


To both of you, if you are concerned, please visit a doctor. But do yourself a favor. TRUST your doctor. Trust that they know what they're doing. Trust that they know more about medicine than you do after 30 mins of searching on the web. Google is not a substitute for an informed medical opinion and Googling your symptoms does not make you a doctor. There is a reason why they went to medical school and spent many years in residency.

So do yourself a favor. Take a deep breathe. Now say aloud with me: "I do not have ALS." Say it again and again until it sinks in. Because I promise you, as soon and you stop worrying, your symptoms will fade away. It my take awhile, but one day you'll notice that they're gone. That's what happened to me. I only wish I had not wasted a year of my life worrying about ALS before I finally accepted that there was nothing wrong with me.

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Old 12-28-2016, 09:41 AM   #5
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Ghaa HB User
Re: Fear of Als is consuming me

Ughh same Im having a nightmare after being so positive and happy i have muscles twitches when im resting i feel so scared i developed anxiety in October after my shoulder pain im only 19 yo pls any advices 💔

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Old 03-20-2017, 01:42 PM   #6
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Silas1067 HB User
Re: Fear of Als is consuming me

I went through a big ALS panic 10 years ago.

Following a viral infection, I started to get all kinds of twitching, cramping, etc. in my legs. Even my chest muscles would twitch. Naturally, being a hypochondriac, I freaked out.

The stress of graduate school, work, and this sent me into full-bore panic mode for weeks. I made an appointment to see a neurologist, but I would have to wait a month.

So this is what I did (and it is what I recommend)

1. I joined a health club and started working out every day. I worked with weights quite a bit, and would try to increase the weight and number of sets every time I went in. I reasoned that if I truly had ALS, I would be getting weaker every day.

Well I didn't. I got stronger every day, and more fit.

2. At night, I would relax with a glass of wine, a watch a film to distract me. Paid more attention to the wife and kids and took my mind off the twitching/cramping.

3. I would take long, hot baths to relax.

Within 3 weeks, the twitching was virtually gone, and I was in some of the best shape of my life. My wife was pleased with how I looked.

I cancelled the neurologist appoint and never looked back.

So instead of focusing on information, or obsessing about some awful disease, focus on what you CAN DO now. Work out, eat right, relax, get psychotherapy if needed. Make an action plan.

Now you don't have ALS at 28 --but you don't need me to tell you that. You need to make a plan to get physically and mentally healthy, and the stress/symptoms will vanish.

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