*** rabbit hole

[VIN954]

25M. I've read the sticky more time than I can count (have the original version from alsforums bookmarked). The problem is that I keep reading about cases that don't play by those rules i.e. people who start with twitching, people whose weakness starts more gradually and is mostly feeling at first, and people who had clean clinicals and EMGs before turning out to have it. I also keep reading stories of young people in their 20s getting *** even though it's supposed to be super rare in our age group.

My anxiety revolves around upper motor neuron onset/dominant ***. I won't describe what I did because I don't anyone else to start checking themselves, but I went down the internet rabbit hole, looked up a bunch of neurological tests, and convinced myself I was positive for some of them. It's been 14 months since the fear started but I keep reading that UMN disease progresses VERY slowly and that LMN disease may not appear for years. To this day, I still have zero weakness or other motor deficits and can do everything I've always done, no problem. It's just the UMN signs I think I have. I also went through a phase of worrying about twitching but that's died down some since then.

Now, my mom is not only a doctor but a neurologist so I've badgered her with my worries. She is not at all convinced there is anything wrong with my nervous system. She also did an EMG on me back in December of 2021, which she swore up and down was completely normal, though I read that UMN disease doesn't show on EMG. But in typical HA fashion, when neuro-mom contradicts what I read on the online, I believe my internet research over her medical training and experience. This is in large part due to my reading posts online about general neurologists missing *** and about atypical presentations of ***.

I've now sworn off reading anything medical on the internet except for HA forums but even on places like here, many users manage to convince me from their descriptions of their symptoms that they have the real thing and not HA. Everyone makes their symptoms sound so convincing and so in line with the condition they're worried about. I find myself looking through people's histories to make sure they didn't have ***. Users who are lost to followup always scare me and make me think they are either dead or too sick to make an update online. Seeing anyone in a wheelchair is also super triggering for me. I always wonder "is it ***?" even though I know there any variety of reasons why someone might be in a wheelchair.

[BlueIris]

You're creating a demon in your own mind if you can't even refer to ALS by name. Words have power, and you are empowering your own anxiety on a MASSIVE scale.

Acknowledge and dismiss the ALS thoughts when they come up, no matter how often they come up. Look into therapy, and if you're too far gone to be able to do the work unaided, look into meds to get you into a better headspace to help yourself.

I know how much this stuff sucks, but you're making it worse for yourself. You can't un-read the things that have frightened you, but if you stay away the impact will lessen over time.

[NoraB]

Users who are lost to followup always scare me and make me think they are either dead or too sick to make an update online.

Most people get the all clear and just don't bother to update..

[VIN954]

You're creating a demon in your own mind if you can't even refer to ALS by name. Words have power, and you are empowering your own anxiety on a MASSIVE scale.

Acknowledge and dismiss the ALS thoughts when they come up, no matter how often they come up. Look into therapy, and if you're too far gone to be able to do the work unaided, look into meds to get you into a better headspace to help yourself.

I know how much this stuff sucks, but you're making it worse for yourself. You can't un-read the things that have frightened you, but if you stay away the impact will lessen over time.

I think you're right. I do get a bit triggered whenever I see those three letters together, even outside a medical context. However, my censoring the name of the disease out was really more for other people than for myself. I come from other forums where it is the norm to do this. Maybe that's not such a good thing?

I do take an SSRI, which does help.

I don't google ALS anymore; I've wasted too many hours of my life doing that. However, getting it to stop living in my head rent free is easier said than done.

[BlueIris]

Agreed, yes. I've had a few pet HA phobias that it took years to overcome.

To explain (and so that I don't come across as too mean!) I think that if I or anybody else is triggered by the sight of a word, that's something that needs working on, not indulging. To censor it is to give the word further power - think of Voldemort in the Harry Potter books. Rowling used this as a technique to build up mystique and terror. Things tend to be more frightening when you can't see them clearly, which is something that gets used a lot in horror movies.

I don't want to give my fears a greater hold over me than they already have. Further evidence? Actually having low-grade skin cancer and getting it dealt with was infinitely less terrifying than my imaginings while I was too scared to see a GP about it.

I really hope you reach calmer waters soon.

[VIN954]

The main thing I have trouble getting over is that the UMN tests are supposed to be objective and I believe I'm doing them correctly. Therefore, I can't wave those away as anxiety as easily as things like twitching or perceived weakness. It seems like my rabbit hole is different and deeper than that of everyone else here. I got over worrying about twitching and weakness but the UMN signs make me think "what if I'm not like the others and have the real thing?" Logically, I know that practicing neurologist mom is much more likely to be correct than my anxiety ridden self (she is entirely unconvinced I have anything). However, I've convinced myself that general neuros don't know squat about ALS and that I now know more than my mom from my obsessive online research. Therefore, when she contradicts what I read on the internet, I believe the internet. I know this is classic HA but it also seem entirely logical and makes perfect sense. My logic is that the people who write the articles I read must also know what they're talking about since I use reputable sources. Therefore, someone has to be wrong. It also doesn't help that everyone on the internet seems to have a horrific bad doctor or misdiagnosis story. I'm also ashamed to admit I've lurked on alsforums and read many stories of general neuros missing atypical ALS.

[Mocadona]

It seems to me like you're aware of how illogical this all is but just can't shake the what if feeling. This is definitely a good thing. You're looking for ways to talk yourself into having this disease and ignoring all the more compelling ways to talk yourself out of it. Let's look at facts. It's extremely rare in your age group, under 40s I believe almost half are familial cases and starting in UMN rarer again. You have had an EMG which was clear, your own mother is a neurologist and doesn't suspect anything and you've had this for 14 months with no progression. So what's the evidence for? Some neurological tests (I am assuming reflexes like Babinski etc) that you cannot perform on yourself reliably and have no training whatsoever in what to look for. On balance which is more likely? What would you say to a friend if they came to you with this story? Have a think about this - your neuro mother doesn't know what she's talking about because she's not an ALS specialist but you do because you've read a few journal articles and posts on forums. We're venturing into "I do my own research" conspiracy theory territory here!!

It seems like my rabbit hole is different and deeper than that of everyone else here.

I hate to burst your bubble here, but I would wager every person that has ever posted here has thought the same. We are very good at convincing ourselves our case is different.

[VIN954]

It seems to me like you're aware of how illogical this all is but just can't shake the what if feeling. This is definitely a good thing. You're looking for ways to talk yourself into having this disease and ignoring all the more compelling ways to talk yourself out of it. Let's look at facts. It's extremely rare in your age group, under 40s I believe almost half are familial cases and starting in UMN rarer again.

Unfortunately, I've also read that something like 60% of young onset cases start UMN. I also keeps coming across stories of young people getting it to the point that it's become common in my mind. I've heard the familial statistic thrown around but I've never found a source for it in all my exhaustive searching.

You have had an EMG which was clear, your own mother is a neurologist and doesn't suspect anything and you've had this for 14 months with no progression. So what's the evidence for? Some neurological tests (I am assuming reflexes like Babinski etc) that you cannot perform on yourself reliably and have no training whatsoever in what to look for

The problem is that I managed to convince myself that I do have progression. Back in July, I found what I believe is sustained clonus in only my left ankle on passive dorsiflexion. I'm certain this wasn't there when I (and my mom) checked previously. According to the internet, sustained clonus is 100% proof I have a UMN lesion if I have identified it correctly while according to my mom, this by itself is meaningless (she didn't deny what it was, though). It doesn't seem like anything else has happened since then but I've also been trying to stop my constant checking.

Have a think about this - your neuro mother doesn't know what she's talking about because she's not an ALS specialist but you do because you've read a few journal articles and posts on forums. We're venturing into "I do my own research" conspiracy theory territory here!!

I know, it sounds like classic HA. However, I can't shake the feeling that I'm not like the others and that my worries are rational and correct.

[Mocadona]

I'm wary of trying to try reassure with stats or anything here any more because you need to learn to work through this yourself, but you're "coming across" these things because you are looking for them and 60% is basically halving the already miniscule odds.

Even look at the language you're using... Sustained clonus on passive dorsiflexion. If you're not a medical student or doctor that shouldn't be in your vocabulary. Again you're doubling down that you know more than your neurologist mother (who would be far more invested in your well being than anyone's normal neurologist) because you read some stuff on the internet.

It sounds like classic HA because it is, I've unfortunately been very very deeply in there and am still fighting my way out the other side

[Hypo84]

Do not try to self-diagnose. In my first neuro vidit vack in 2013 doctor from foot clonus and suggested MRI. Back then I was scared of ALS so never went to MRI and only a couple of months later saw the clonus in report and Googled.
I panickly went to neuro in 2014, a year later and another neuro wrote subclonus which is caused by stress
.

My point is, you can't correctly self disgnose this.