Serious ALS Fear

[Sommer J 0]

So, I have been posting a lot lately. Little things here and there but it all comes down to the simple fact that I’m terrified of ALS. About a month ago I started to experience(notice) twitching and I decided to look up twitching. Immediately my heart jumped out of my chest and I saw nothing but doom from there. I couldn’t/ can’t get it out of my head. I’m struggling day to day. It’s hard to eat sleep or even smile. As time went on more “symptoms” have occurred.

-body wide twitching ( especially leg and eye of opposite sides.

-feeling of hair on my tongue

-tingling/burning/jerking and cramps

i don’t know what to do anymore. My family doctor brushes it off as nothing but anxiety and won’t refer me to a Neuro unless it gets worse. 

It sucks because in the back of my mind I feel like I’ll dying.

i am scared and I know I do need help.

I just want to get past this and live happy again.  

 

[Doug97 19]

My calves started twitching all of a sudden 3 months ago. I started googling, then freaking out, panic attacks, insomnia, the works ... then I started twitching everywhere, and I freaked out even more. Spent a few weeks utterly terrified, testing my strength 10 times a day, googling a hundred different variations of keyword combinations.

But I eventually realised through reading about it that ALS just doesn't start with only twitching. I think it was seeing how many threads there are on this forum (honestly about 50% of them) were from people with muscle twitching who are bricking it over ALS. It struck me that there must be about ten thousand times more people with twitching muscles freaking out about ALS than people who actually had ALS.

Also, Benign Fasciculation Syndrome is a thing and the calves are most commonly affected.

When I finally realised all that, my twitching stopped. Except in my calves admittedly. Unfortunately, after spending week after week with my adrenaline, heart rate, cortisol and blood pressure turned up to 11, I started to get skin pain. Also not a symptom of ALS, but it led to another round of googling until I found a horrible disease even rarer and harder to diagnose than ALS. This is the kind of disease my hypochondria can really get its teeth into - the prospect of spending years in genuine, life-changing agony while all the time being disbelieved by doctors and labelled a loony is right up my alley. Some twitching calves became the least of my worries.

But then someone on this site explained to me that she gets the exact same pain, as do many other members, and it's 100% definitely caused by anxiety. The next day, I woke up pain free.

(OK I'm a bit sore right now but just the fact that it can go away at all proves it's not what I feared).

PS My neurologist said that if there's no weakness, numbness or back pain the twitching is nothing to worry about, she doesn't even want to see me. And you're not even the right sex or age!

PPS there was a story about ALS in the paper today, there's not even so much as a mention of twitching, first thing she knew was her hand stopped working.

 

[MARC 428]

My friends wife passed away of ALS in Decembrr 2020 at age 62. Her first sign of ALS was her hand waving from side to side like she was waving goodbye, but she was not waving goodbye. She got progressively worse and passed away around 2 years after initial diagnosis. 

 

[Doug97 19]

On 5/7/2021 at 8:39 PM, poulwalker said:

Psychological symptoms are common and are indirectly related to the disease and its progression. Patients with amyotrophic lateral sclerosis (ALS) generally have preserved cognitive functioning with a progressive loss of control over their disease process and daily functioning. This can be very distressing to the patient and his/her caregivers, and symptoms of fear, anxiety, and depression may manifest. If left untreated, these symptoms may result in a decline in the patient's functioning out of proportion to disease severity. ^[1, 47]  A study by Körner et al found that in patients with ALS, depression influenced quality of life, independent of physical impairment. The study involved 159 patients with ALS, who were evaluated with the Beck Depression Inventory-II, the 36-Item Short Form Health Survey, and the ALS Functional Rating Scale-Revised (ALSFRS-R)

Your post was utterly useless, completely irrelevant and not helpful at all. You should be ashamed. 

[Somjtaylor 0]

On 9/22/2021 at 7:12 AM, Doug97 said:

My calves started twitching all of a sudden 3 months ago. I started googling, then freaking out, panic attacks, insomnia, the works ... then I started twitching everywhere, and I freaked out even more. Spent a few weeks utterly terrified, testing my strength 10 times a day, googling a hundred different variations of keyword combinations.

But I eventually realised through reading about it that ALS just doesn't start with only twitching. I think it was seeing how many threads there are on this forum (honestly about 50% of them) were from people with muscle twitching who are bricking it over ALS. It struck me that there must be about ten thousand times more people with twitching muscles freaking out about ALS than people who actually had ALS.

Also, Benign Fasciculation Syndrome is a thing and the calves are most commonly affected.

When I finally realised all that, my twitching stopped. Except in my calves admittedly. Unfortunately, after spending week after week with my adrenaline, heart rate, cortisol and blood pressure turned up to 11, I started to get skin pain. Also not a symptom of ALS, but it led to another round of googling until I found a horrible disease even rarer and harder to diagnose than ALS. This is the kind of disease my hypochondria can really get its teeth into - the prospect of spending years in genuine, life-changing agony while all the time being disbelieved by doctors and labelled a loony is right up my alley. Some twitching calves became the least of my worries.

But then someone on this site explained to me that she gets the exact same pain, as do many other members, and it's 100% definitely caused by anxiety. The next day, I woke up pain free.

(OK I'm a bit sore right now but just the fact that it can go away at all proves it's not what I feared).

PS My neurologist said that if there's no weakness, numbness or back pain the twitching is nothing to worry about, she doesn't even want to see me. And you're not even the right sex or age!

PPS there was a story about ALS in the paper today, there's not even so much as a mention of twitching, first thing she knew was her hand stopped working.

 

Wait so if I have back pain with my twitching it could be Al’s because I have had back pain for a very long time with the twitching. About two years 

[Doug97 19]

5 minutes ago, Somjtaylor said:

Wait so if I have back pain with my twitching it could be Al’s because I have had back pain for a very long time with the twitching. About two years 

It could be, although that also could be a bulging spinal disc compressing the nerve. Speak to a neurologist. 

[Somjtaylor 0]

Just now, Doug97 said:

It could be, although that also could be a bulging spinal disc compressing the nerve. Speak to a neurologist. 

Now I’m scared as hell. I thought I got over my ALS fear now here goes the rabbit hole 

[Doug97 19]

There's no reason to be afraid of something as simple as a bulging disc, something like 10% of the population has them. 

[Doug97 19]

Wait, I misread your first post. ALS doesn't come with pain. You don't have ALS. Especially since you've had symptoms for 2 years and still no weakness. If a person doesn't have weakness, they don't have ALS. That's what ALS is. 

[Somjtaylor 0]

thank you for responding back. that was a huge eye opener for me because It reminds me of how fast people like me can go straight back to the stage of doom. I'm starting to think depression and anxiety is the real demon we should all be afraid of.

 

you saved me from that just now.

[Doug97 19]

It's all part of Health Anxiety. Trust me, I know. 

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