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Treatment options for previous sudden-onset symptoms highly suspected to be PANS


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Hi, I'm a 17-year-old from Australia and suspect that all my conditions that I've developed since I was 14 may all be caused by PANS. I have had three sudden-onsets of symptoms, in June 2018, May 2020 and January 2021, all with various psychological and neurological symptoms which have resulted in numerous diagnoses but which have all been treatment-resistant, with medications giving terrible side effects. 

My first sudden-onset in 2018 is mostly in remission currently, whilst I still deal with all the symptoms from May 2020's and January 2021's. 

In June 2018, I experienced sudden severe social anxiety, severe generalised anxiety with 3-4 panic attacks daily, psychosis (vivid hallucinations - tactile, visual and  auditory predominantly), OCD and sleep disturbances. I was diagnosed with social anxiety and generalised anxiety with a partial psychotic disorder (I was never officially diagnosed with OCD as the psychosis/hallucinations were worse and impacted my life more, also my compulsions are more subtle as many of them are mental or I can blame them on my tics or mask them making them look like another movement or behaviour). This onset is mostly in remission now, however, I still have OCD and mild social and generalised anxiety (my sleep disturbances were in remission, however, they came back in January 2021). 

In May 2020 I developed severe sudden onset motor and vocal tics and in January 2021, I developed frequent non-epileptic seizures (about 100 a day), sleep issues, episodic paralysis and mobility difficulties. 

Basically, from this, I was wondering if I have to have another sudden-onset of symptoms in order to receive treatment (and be tested diagnosed, although I know that some doctors will diagnose off of medical history), or if I can receive treatment now? And if I can get treated now, what options do I have? 

Any help/advice/ideas would be greatly appreciated :)

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Wow—that sounds intense. So glad that the first exacerbation is settling down. Have you determined a trigger/triggers? Strep? Myco P? Lyme? Mold? There are tests for all of these things. Does Motrin ever help temporarily with symptoms or take the edge off? Antibiotics and steroid tapers both helped my son through flares.

Wishing you all the luck in the world with this!

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Hi, thank you so much for the reply, I will try motrin as I haven't yet, is it the same as ibuprofen or advil? 

We don't know the exact trigger for the first flare but I know that I was sick with something like flu or cold in 2018. In 2020, I received a flu shot and my flare arose from that (I woke up with tics just over a week after receiving it). In January 2021, I had a stomach bug (don't know what kind, we didn't think to get it checked out) which triggered the NES and paralysis and other symptoms. 

I just wasn't sure if I could still get tested or treated for these specific triggers or anything because so much time has passed. 

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