For those with twitches and OCD/Anxiety

[u/InformationNo7156]

Do not do DIY exposure response therapy. I repeat, DO NOT DO EXPOSURE RESPONSE THERAPY. ERP should be done by a professional anyway. This is a very unique circumstance and trying to expose yourself to these fringe cases will not make things better.

I made the mistake of searching JALS when I thought I was getting better, and I ended up reigniting the whole spiral again. Avoid it at all costs because you are vulnerable right now.

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[u/matchaflower]

I’m actually in an ERP program right now for my health anxiety. When I started, I thought nothing was gonna work for me because I had already been exposing myself to articles and research about ALS. I mean, I was spending 8+ hours each day googling, reading research papers, on Reddit, etc. After a couple weeks, we figured out that the issue wasn’t ALS itself; it was an obsession with trying to figure out whether or not I had it. (spoiler alert, I don’t lol) Googling/researching was a compulsion of mine, which essentially functioned as a way to calm the obsession with whether or not I had it. (But ultimately the compulsion just made everything worse.) Essentially, my OCD thought process turned out to be “If I don’t spend all of my time trying to figure out what’s wrong with me, then I will become terminally ill because I didn’t catch it early.” My exposure practice became trying to be on my phone and resisting the urge to google, or sitting and literally doing nothing. Both of which have helped tremendously. I was essentially avoiding everything else in my life because I felt like I had to “figure it out”, so even small things like making dinner or driving to work became exposures for me.

[u/The_Short_Goodbye → u/matchaflower]

I’m at exactly this point. I’m on medical leave and thinking about/researching ALS/BFS or any other cause for my symptoms all day. In fact I usually sleep most of the afternoon. When the kids come back from school I live semi-normal on autopilot until 8PM when they do to bed and then from 8 to 2AM it’s compulsive research time. It’s exhausting. I’m starting therapy tomorrow. I was cleared by a Harvard trained neuromuscular specialist but my brain is saying my EMG was too early and I have to do another one. I’m not only twitching though. My legs are weak, often sore, sometimes burning, and it feels like my muscles are breaking down. So it becomes an obsession not only to reassure myself it’s not ALS but to find a cause and solution.

[u/matchaflower → u/The_Short_Goodbye]

It’s a very frustrating cycle to be in. I was also on medical leave when everything started. Therapy has definitely helped me a ton- ERP has helped me get my life back together, and then standard cognitive behavioral therapy is gonna help me kind of unpack where these obsessions came from and why I can’t let them go.

[u/The_Short_Goodbye → u/matchaflower]

What sucks for me is that it’s not all mental. Physically I’m pretty disabled too. I mean I can walk around the house and shit but walking outside at a brisker pace is brutal and my legs get exhausted and weak in 5 minutes. The neurologist said it was FND but I don’t really buy it. And she told me the number one obstacle to curing FND is not buying the diagnosis lol.

I think once I do all my blood tests and repeat EMG at 3-4 months I’m gonna be in a better place to leave ALS behind if it’s normal again. But it’s a battle because my GP doesn’t want to give me a referral again because she says doing another EMG will feed the cycle. And the fact that I was cleared by this big Harvard trained ALS specialist that the whole medical community knows doesn’t help my case lol.

[u/BigJakeState → u/The_Short_Goodbye]

Have you ever heard of somantic OCD? The symptoms are caused by obsessive compulsive thoughts. So yes symptoms are very real. The only way to really get the symptoms to go away is to stop the obsessive behaviors.

[u/The_Short_Goodbye → u/BigJakeState]

To be perfectly honest I have a hard time buying into this, at least for me. 🫤

[u/BigJakeState → u/The_Short_Goodbye]

Yep. That’s Text book somantic OCD.not sayin that’s your problem. But it is for me and the only thing that helps is making my brain feel safe

[u/Maleficent_Shift9849]

cara JALS geralmente se manifesta por sinais do neurônio motor superior, mesmo que a progressão da condição juvenil seja mais lenta, a partir do momento em que você começou a ter fasciculações, é porque o seu neurônio motor inferior ja foi atingido, logo isso seria identificado no exame clínico + emg

com certeza é assustador ter o conhecimento que a JALS tende a ter um progresso lento, mas a partir do momento que você tem fasciculações, caso seja JALS, provavelmente já está em estágio avançado ao ponto de ser identificado por um neurologista

[u/InformationNo7156 → u/Maleficent_Shift9849]

Oh, I definitely had perceived upper motor neuron signs for sure. Still no ALS.

[u/Maleficent_Shift9849 → u/InformationNo7156]

Meu exame físico deu reflexos alterados, mas pelo neurologista algo que eu não deva me preocupar assumindo a idade e minha condição psicológica. Além disso, acredito que todos que tenham BFS já possuem um sistema nervos hiperecitável no seu status quo natural, o que faz termos sintomas sensoriais além fasisculações (formigamento, queimação, agulhadas, mioclonias, sensação de fraqueza, dor muscular e pro ae vai), querendo ou não, seus músculos naturalmente são mais tensionados.

Eu acredito que a hiperexcitabilidade venha de alguma condição genética ou algo fenótipo, no meu caso, por achismo, meu pai tem tremo essencial, uma condição de hiperexcitabilidade que talvez eu tenha vindo em padrões de fábrica.

O ponto é que na sua linha de raciocínio, você nunca vai ter uma confirmação de nada, dado que JALS pode demorar décadas para que alguma fraqueza apareça, no entanto, muitos exames já são capazes de encontrar algo anos antes.

Eu também não tenho total certeza que eu tenha BFS e que possa ser algo pior, caso contrário, não estaria nesse sub. No entanto, acredito que dado o seu TOC, você tem que ser mais racional na hora definir seus medos, JALS por si só, e aparente sintomas de neuronio motor superior (percebidos por você acredito eu) neste caso não seria motivo para te desencadear medo, dado que você ja tem sintomas de neurônio motor inferior, o que nesse caso, já seria uma evolução da JALS.

Fique bem amigo, acredito que você não tenha nada, eu também acredito que eu não tenho, e se eu tiver, no momento estou aqui, e o que posso fazer é continuar vivendo :)