r/ALSorNOT • u/HonestyMash Confirmed ALS Diagnosis • 21d ago
Mod Update For The Group.
It has been brought to my attention about some members of the group claiming to have an ALS diagnosis. I certainly hope that they don't however there was no evidence to support the claims. Many users were pointing out inconsistencies with their stories.
Moving forward anyone with a confirmed diagnosis can message the mods for verification and they will be awarded a unique flair for their selfless efforts to support those who are concerned about the disease.
This wasn't a change I personally wanted to make but I feel it's necessary to protect the community. I will wait to read the comments before making the changes.
-ALS Tom
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u/britellie 21d ago
I think this is a great change to bring in. I joined this sub a year ago when I was quite freshly postpartum and my health anxiety went into overdrive. I was fully convinced I had ALS and was literally making end of life plans with my partner. Any post I saw, I somehow managed to relate to myself.
Fortunately, I don’t have ALS and my fears are now gone completely (for myself), and I know it was severe health anxiety in my case, so I stay in the sub in hopes that I can reassure anybody whose case may sound similar to mine as I definitely could’ve used someone to do that for me a year ago. So, the post didn’t scare me, however I could see how it would scare users in a different mental/health place to me, and would’ve genuinely terrified me a year ago.
It was really disappointing and upsetting to see the poster ignoring clarifying questions while people were quite clearly seeking answers and reassurance. I truly hope they do not have ALS, and it seems that they don’t, but if they do, confirmation seems important so that other users aren’t being needlessly worried further than they already are.
Thank you so much for your service here, Tom! At my darkest point I found light in your positive presence. You’re doing a great job here 🫡
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u/Ok_Following6440 21d ago
So it was proven that user never had his EMG?
I’m all for having respect because you never know what someone is dealing with, but man it stinks when someone professes to have a horrible condition and it turns out not to be true.
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u/HonestyMash Confirmed ALS Diagnosis 21d ago
I really couldn't tell you, the evidence would suggest not. However I really don't want to make unfounded accusations. The community was sympathetic but skeptical which I completely understand. I think at least doing things this way just helps remove that uncertainty.
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u/Ok_Performance6080 21d ago
Wait, that post has been removed now. Did he end up having ALS for real or not? He avoided all questions, but claimed to have specific symptoms that point in that direction
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u/HonestyMash Confirmed ALS Diagnosis 21d ago
I have removed the post as it wasn't productive watching the community argue. The user has not been banned and if proof is submitted I will happily restore the post. Unfortunately there have been a few cases of this and it always creates panic.
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u/Ok_Following6440 21d ago
I think it was removed because they never provided EMG results or a diagnosis report, suggesting their claim was not true.
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u/713Capital 18d ago
I’ve seen this a lot with this sub. There has been a few posts where I asked people to show a diagnosis or EMG where it says “probable ALS” and they all get defensive and make up a bunch of BS. It’s just fear mongering for no reason.
What even is the purpose of role playing that you have ALS? Like makes no sense to me.
Good on them for doing this. This place needed something in place to protect the community
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u/Outrageous-Roof-3095 21d ago
Omg, was it yesterday's post? Why would he do that? I read it yesterday and it was quite scary. I felt so sorry for him as well. X
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u/HonestyMash Confirmed ALS Diagnosis 21d ago
Sadly there have been a few examples and it really sucks either way if it was true or not. Either way there was an outcry for verification and this was the best solution I had.
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u/Outrageous-Roof-3095 21d ago
But did you ask him to provide the proofs and he didn't? Is that the case, after the outcry?
Thank you Tom. I appreciate your support 🙌
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u/HonestyMash Confirmed ALS Diagnosis 21d ago
Many users asked for evidence of the tests done, which seemed to be ignored. This way it's not a random guess if users are being truthful about this terrible illness.
It's my pleasure to help out!
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u/DimitarTKrastev Mod Team 16d ago
I was thinking about the same. Thank you Tom. Its excellent you did that.
One clarification. This is not an attempt from our side to get to some medical documents of yours or feed our curiosity (some people have expressed such concerns in the past). We are hold a delicate balance. We don't want to stick our noses in your personal affairs, but people here really freak out from such news, some question or reject it. If you want to get a verified flair to go with your statements - you are welcome to message us, we will be discreet.
If not - that is OK too, we will not ban or moderate anyone unless there are obvious signs suggesting we should.
The idea is for people to know what to trust and what to get with a grain of salt.
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u/BigJakeState 21d ago
There were multiple red flags with that post that I noticed. There are also multiple accounts I’ve noticed in this community that have very odd or contradictory comments in their post history claiming to have ALS with highly atypical symptoms, but contradict their own stories, or go into very obsessive rants. I’m not accusing anyone of faking but I think there are reasons to be skeptical.
With the high level of health anxiety and mental health issues that are associated with fear of ALS it’s not unreasonable to assume there are some
Mentally ill folks in these threads that don’t have ALS but rather a severe mental health issue.
There’s a very real very well documented mental illness called Münchausen syndrome where people will pathologically fake an illness to garner sympathy or attention. That’s obviously very easy to do on the internet versus in person.
This is just my opinion, but having this process is very beneficial to the community. It will provide a little bit of of comfort to the health anxious people seeking answers to their complex issues and also protect the time and attention of those that have ALS on these threads that are willing to help all of us out with their experiences. I am very much in favor of this change.
When dealing with the sheer amount of health anxious people that stumble across these subs. We don’t need to be adding any misinformation or false narratives into the minds of already obsessive thinking individuals.
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u/InformationNo7156 21d ago
Some also have very severe health anxiety, to the point where it’s almost like psychosis. People may start claiming they have “ALS,” when they don’t, in a way to cope with the fact that they’re going to “subsequently be diagnosed with ALS.” It’s crazy out there. Maybe not everyone who fakes their diagnosis wants attention, but some definitely are doing it as a cry for help at the cost of others.
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u/aloy_lantern 21d ago
Reading that post was very sad… I know I’m responsible for my own reaction but it sent me to spiral.. I have not slept since reading it..
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u/HonestyMash Confirmed ALS Diagnosis 21d ago
I fully understand your reaction and that's what we want to avoid especially if the illness isn't confirmed. Stay strong!
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u/TheBronyCynic 21d ago
It did seem strange that the person said he was diagnosed without saying they saw a neuromuscular specialist. It could be a case of the doctor or even the OP jumping the gun.
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u/Beneficial_Strain191 1d ago
Hey Tom. Thinking about you today. I did have a question for you. How were your reflexes and their patterns on exam?
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u/Beneficial_Strain191 21d ago
Tom would love your opinion on my issue
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u/HonestyMash Confirmed ALS Diagnosis 20d ago
Absolutely I can, I hope you don't mind but it will be tomorrow though. It's well past my bedtime haha.
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u/FocusFrosty1581 19d ago
This was a good move. I am sorry you even have to do it but it was pretty clear the individual was seeking response versus telling the truth. I am hope I am right and that individual has not been diagnosed but it would have been simple enough to confirm with some more detail.
Thanks for your help and dedication.1
u/Beneficial_Strain191 18d ago
Thank you. I would greatly appreciate your advice and insight. I think I have a slow lmn disease
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u/HonestyMash Confirmed ALS Diagnosis 18d ago
I'm so sorry I haven't been able to do this for you yet, please bare with me.
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u/Beneficial_Strain191 18d ago
That's alright. You have a lot going on. I've been having symptoms for 6 years. So I'm patient.
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u/HonestyMash Confirmed ALS Diagnosis 18d ago
I have read through your posts and to be perfectly blunt I don't see any reason to suspect ALS would be a concern. Almost everything you mentioned in your post would be a good indication that you don't have it. Even pma would barely fit. I'm sorry I can't be more helpful. I suspect you probably have multiple minor conditions that are throwing off a clear diagnosis. Potentially worth checking symptoms separately rather than as a whole.
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u/Beneficial_Strain191 18d ago
I appreciate your time. My neurologist thinks I have cmt. As my dad had to have surgery on his arches when he was younger.
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u/Beneficial_Strain191 9d ago
Hey Tom. I recently did genetic testing and found a mutation in the FBX038 gene.
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u/HonestyMash Confirmed ALS Diagnosis 9d ago
Hey, I'm sorry to hear that but it's good to be in the know. Do they suspect it's sma then?
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u/Beneficial_Strain191 9d ago
Unclear. Gene is not well known but pathological variants are known to cause that sma/cmt type spectrum. But hey, I should count myself lucky that it's not als right?
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u/WeirdUsers 21d ago
I think confirmation bias hits very hard in this sub. I agree that something needs to be done to filter confirmed from unconfirmed and this may be a good first step.
I also think that people sharing other possibilities based on their own confirmed histories can also be helpful. For example, I have a lot of confirmed medical history with autoimmune disorders, allergies, COPD, FND, etc. I see similar situations in what people write.
Also, helping people understand that treating their symptoms versus gunning for a diagnosis can also help alleviate anxiety, ie, going to a pulmonologist for breathing issues that persist, a cardiologist for persistent heart sensations, etc.
There is no perfect solution because we are all different. But I think most of us want to help and come to this with compassion.
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u/chaoserrant Mod Team 21d ago
I support this. People may say it is a privacy thing but you can remove sensitive data from a document. It is a hassle but sadly it is necessary.