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  1. Thank you so much. I have recently gotten the Cunningham Panel which was ordered by my new Neurologist and are awaiting the results. He said that if it comes back with anything, he will treat it, but if it comes back clear, which he believes it will, then he won't treat it as he doesn't seem to think that there are any scientifically proven treatments where the benefits outweigh the risks (I have had serious side effects for treatments for Tourette's and my NES previously). He said that there has been no conclusive evidence that there are treatments which are effective, and so unless the testing comes back with anything, he's not willing to treat it. Based on my history, he is fairly sure that PANS is what I have, however, he is hesitant to treat it as he does not want to 'mess' with my immune system in the middle of the pandemic, which is understandable as I have expressed that I am not going to get the covid vaccine after what happened with the flu vaccine and the knowledge that typically, each flare is worse than the last (this has been the case for me). Thanks to the suggestion from Cmac to try motrin/ibuprofen, we have found that when my symptoms get really severe, particularly my NES, that ibuprofen is beneficial in reducing the symptoms to their normal levels, however, it hasn't reduced the symptoms below their normal level thus far.
  2. Cool, thanks. Unfortunately there is no PANDAS doctor where I live and there is only 1 (maybe 2) in all of Australia but they are both interstate and all the state borders are closed currently and for the foreseeable future.
  3. 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.
  4. 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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