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MarcP

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  1. Thanks for your kind and encouraging answers! I hoped a positive Cunningham Panel test result would facilitate further steps, especially with physicians who don't have a lot of experience with PANDAS/PANS but maybe you're right and it's better to directly start with searching for infections. I found this list of recommended tests on pandasnetwork.org. Is there anything you would add to this list right from the beginning, maybe lumbar puncture or MRI? Another question is, do you think it would be helpful to do a (longer) steroid trial? Based on your experiences, is there a small chance that baseline stays improved in the long-term after taking steroids for some weeks? I also feel that NSAIDs (like Motrin or Aspirin) help me to some degree. In a recent paper Susan Swedo and her colleagues mention the use of NSAID trials (for six weeks). I read that a lot of your children/you take Motrin on ocassion. Is it always just helping while you take it or are there cases (maybe after taking it for some time) where the positive effects lasted even after tapering if off?
  2. Hey, I've been reading on this forum (whis is a great ressource) for quite a time now but this is my first post. English is not my native language but I hope you can understand everything. I'm a young adult and have ocd since I was small child. Roughly a year ago my ocd almost completely vanished for some days while I was taking steroids for another reason. Then I was searching on the internet why that might have happenend and found out about PANDAS. I also learned about typical additional PANDAS/PANS symptoms of which I have/had some: I had bad separation anxiety while I was a bit younger, still have some texture and sound sensitivities and my mom told me that when I was young I had phases where I needed to urinate extremely often. On the other hand my ocd never "waxed and waned", it's always there (maybe this was different when I was very young while the whole thing started, but I don't know). My question is, based on your experience, how probable is it that I might have Pandas or Pans? And if you think it's probable, would it be wise to do the Cunningham Panel as a first step? One week ago I told the psychiatrist who diagnosed ocd some years ago about PANDAS and while he finds it controversial I think he would support me. Many thanks for reading! Kind regards Marc
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