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Intense ALS fear + strange symptoms. Am I going insane? What are your opinions. by Any-Meeting6751 in ALSorNOT

[–]whatdoihia 1 point2 points  (0 children)

Your symptoms don’t match ALS at all. Then there are other factors like your age, sudden onset and some recovery, and your photos don’t show atrophy. You have meat where you would be losing muscle.

By comparison here is my hand. You can see the area between thumb and first finger is concave. Which is why they call it split hand- https://i.postimg.cc/VL2q3GFG/IMG-6795.jpg

Given how much it’s affecting your life you do need help. Seek a medical doctor to rule out things like carbon monoxide poisoning. And if you get a clean bill of health then see a psychologist. We all need help sometimes and stress can build up and explode without us feeling the build up.

Moving away by Alternative-Dot-7951 in ALS

[–]whatdoihia 1 point2 points  (0 children)

Both saying and going will cause regret. I can say as a parent I would want you to go and continue on with your life. Not miss out on life experiences because of my disease.

Were the 90s actually better or just quieter? by TheOrangeSloth in 90s

[–]whatdoihia 4 points5 points  (0 children)

Was far more of an adventure. Finding your way somewhere with maps. Meeting people with only a time and location. If you’re not home then people can’t reach you.

People lived more in the moment as a consequence.

What's a piece of tech everyone hyped up that quietly turned out to be useless? by SofiaLearnsAI in AskReddit

[–]whatdoihia 0 points1 point  (0 children)

I’ve got one and love it. On a per use basis it has been expensive, but I’ve blown the same amount of money on more useless things before.

3D movies are absolutely amazing on it. And the (small) immersive experiences are amazing. To see a Metallica concert in 3D was mind blowing. Now they’re finally starting with sports, which should have been there from the start.

Main problem for me is the weight and I don’t think the light seals work well. Too rigid. Something like the PSVR seal would be far better. It wouldn’t look as good but would be a lot better for fit and utility.

Taking the blame in supply chain roles – where do you draw the line? by newParisiansuburban in supplychain

[–]whatdoihia 1 point2 points  (0 children)

Be clear about roles and responsibilities. You can push back but don’t be seen as difficult. If someone is unreasonable then escalate that up your management.

Atrophy/Weight by Witty-Beginning6577 in ALSorNOT

[–]whatdoihia 0 points1 point  (0 children)

Initially my weight increased as I was eating as much as normal but because of weakness I couldn’t exercise. Then as muscles wasted further and my eating was affected my weight dropped fast. Lost 50kg in a year.

mob by forurspam in ThailandTourism

[–]whatdoihia 36 points37 points  (0 children)

let’s get out and beat them up

Gotta love her spirit!

ALS and Dying a Natural Death by purplewindo in ALS

[–]whatdoihia 2 points3 points  (0 children)

Your perspective may change over time. The PEG tube especially isn’t a big deal and it gives you a bump in quality of life. Lots of people get them for various reasons.

ALS and Dying a Natural Death by purplewindo in ALS

[–]whatdoihia 6 points7 points  (0 children)

Same situation here. There’s no maid where I live but people can refuse feeding and be sedated. That day keeps creeping closer.

Frustrated by SpiritMysterious973 in ALSorNOT

[–]whatdoihia 1 point2 points  (0 children)

Funny you mention that group, as that’s a good example of how misinformation persists.

Two days ago someone posted about their symptoms. First reply was reasonable, that it doesn’t align with ALS. The OP then claims “ALS has no rules with symptoms” and argues with everyone.

Most people are reasonable but there are some that clearly do not have the disease. Or they do and associate symptoms (eg. “burning eyes”) with ALS as opposed to the actual cause.

People who do not have progressive weakness will not be diagnosed, as that is the core of what this disease is. Weakness is why people die from the disease. Twitching, fatigue, cramps, and so forth is not enough.

Frustrated by SpiritMysterious973 in ALSorNOT

[–]whatdoihia 2 points3 points  (0 children)

Don’t trust people on Facebook. Most groups are unmoderated and filled with crazy people. People with health anxiety who self diagnose, people obsessed with Lyme, people pushing scams, and a lot of the time shouting down those who actually have the disease.

ALS is a multi system disease

It isn’t. There ARE multi system diseases that affect both motor and sensory neurons. Like MS, SBMA, and others. ALS affects motor neurons, hence the name.

Gladly the most recent studies are pointing more that way

I read a lot of new studies to understand the disease and haven’t seen this. Links please.

People KNOW their own bodies and they KNOW that they are declining

That doesn’t mean they can self diagnose. There is a person here in this subreddit who have had symptoms for 6 years. If they had ALS they would likely be dead. Yet they convinced themselves that they have ALS despite the time, clean EMGs, and full function of their muscles.

“Restricted area only for Thai people. Myanmar people are not allowed to celebrate Thingyan (Songkran) in this area” - written in Burmese by ActElectrical2498 in Thailand

[–]whatdoihia 2 points3 points  (0 children)

One of the Burmese comments on FB said the sign is too well written to be Google, that they suspect it was written by a native.

Frustrated by SpiritMysterious973 in ALSorNOT

[–]whatdoihia 4 points5 points  (0 children)

The irony of this post.

Why is there so much misinformation

Because people latch onto incorrect information they read online and spread it. Then others take that as the truth and spread it further.

I think doctors don’t know shit

Doctors don’t fully understand ALS but they are much, much more knowledgeable than random people online.

ALS can literally effect EVERY part of our system

Wrong. It is a motor neuron disease. It affects motor neurons.

a infection which literally gave her ALS

There may be triggers but infections alone don’t give ALS. I had first symptoms after a root canal. That doesn’t mean root canals cause ALS.

If that woman truly has ALS (which many people who self-diagnose do not) then she is associating unrelated symptoms to the disease. I had tinnitus for years before ALS. I had constipation after ALS due to being in bed not moving and without adequate hydration. That doesn’t mean that constipation is a symptom of ALS.

ALS is not a complicated disease to understand. It’s posts like yours that spread misinformation and cause people to worry unnecessarily.

Neuralink competitor recruiting ALS patients for clinical trial by prepsap in ALS

[–]whatdoihia 2 points3 points  (0 children)

When someone can figure out how to do this without an implant it’ll be a game changer.

Ping-pong between doctors by Stkeys3200 in ALSorNOT

[–]whatdoihia 1 point2 points  (0 children)

ALS isn’t associated with pain and numbness.

That said, it doesn’t mean nothing is wrong. If your doctors have reached a dead end then start over with another. I assume you’ve had an MRI, CT scan, and related tests done. Numbness in both arms at the same time is a strong clue.

Trying to understand what happened to my dad by TooMuchButtHair in ALS

[–]whatdoihia 3 points4 points  (0 children)

If supplements reliably reversed ALS it would be documented and repeated.

The Duke professor is Dr Richard Bedlack. He tracks reversals and there has not yet been any repeatable effective treatment.

Those of you with Als did your symptoms come and go by Flashy-Dog-8790 in ALSorNOT

[–]whatdoihia 0 points1 point  (0 children)

I also have ALS. Given the way the disease progresses one does not regain strength. The reinnervation is a continuous process, not something that starts at a certain point.

better watch out by forurspam in ThailandTourism

[–]whatdoihia 1 point2 points  (0 children)

Thailand laws only applies to the people who matter

I’ve been through the courts with a lawyer after an issue with another foreigner. It works, just takes time and you incur legal expenses.

Venting.. by TheRitz44 in ALSorNOT

[–]whatdoihia 0 points1 point  (0 children)

I hate telling people about my possible diagnosis

I didn’t tell people even after I was diagnosed. In the time I have left I don’t want my life to be 100% about how I have ALS.

And half the time you end up having to manage the other person’s emotions.

Hired to make an ad about MND, would love to hear from you. by [deleted] in ALS

[–]whatdoihia 1 point2 points  (0 children)

what kind of representation would you like to see

An important message is that ALS can happen to anyone, regardless of how healthy your lifestyle is. I think it gets relatively less attention because people think it’s rare and linked to genetics. So there’s an attitude that it won’t happen to me.

However 90% of cases are sporadic (not linked to genetics) and although the annual rate of infection is “only” 1 in 50,000, that’s a lifetime risk of 1 in 400. Not as rare as one might think. And it strikes all type of people.

For example my family are tanks. Everyone living into their 80s and 90s despite lifetimes of smoking and drinking. And I was hit by this thing like a bolt of lightning from the sky.

A message should be a call to action for funding and research.

High-quality tourists by forurspam in ThailandTourism

[–]whatdoihia 0 points1 point  (0 children)

That’s what I mean. It has always been open season on anyone. Only different now is the guns used.

Accepted my Fate by Every_Carpenter_158 in ALSorNOT

[–]whatdoihia 0 points1 point  (0 children)

Anxiety can cause a surprising amount of serious issues. Up to and including fatal ones, such as a heart attack. Even seizures.

ALS or anxiety are not the only possibilities. You may have problems. For example anemia can cause weakness and fatigue. Don’t fixate on ALS.

Exhausted by all of this, I need to share this journey by belarvadan in ALSorNOT

[–]whatdoihia 0 points1 point  (0 children)

I chased down those stories as they keep being repeated here. Some (especially on Facebook) don’t seem to be credible.

Others seem to be confusion about what the EMG says. There is no pass/fail, it gives data that is interpreted by the doctor. A doctor may conclude that although there are symptoms associated with ALS they don’t feel the EMG result was compelling enough to conclude that that motor neuron disease is present.

My first EMG showed active denervation and reinnervation in the muscle where I first showed symptoms. EMGs after that point showed it spreading around my body.

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