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About PianoGirl

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  • Birthday 01/15/1995

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  1. Has anyone else experienced language problems due to PANDAS/PANS? If so, what kind of accommodations in school have been helpful? I already have double-time for timed work, but I think I need something more. I’ve started forgetting common words multiple times per day. I can picture the thing that I’m trying to tell you about, and I often will pantomime or demonstrate so that people know what I mean, but I just can’t remember the word. Sometimes I can tell you what letter or sound it starts with, but often I can’t even do that. The biggest problem is that I just went back to college, and
  2. Hi Wombat, I just now saw your reply. Thanks for checking out my blog! My first steroid burst was 50mg of Prednisone for five days. I'm also a very small person, so 50mg was a lot for me. On the third day, I was almost normal, but the fourth and fifth days weren't quite as good--though still far, far better than where I was before starting it. I've heard that some people need longer than five days to see an improvement in symptoms--up to seven days or more. I've now been on a taper for a month, and there are still a lot of ups and downs, though I've never gotten as bad as I was before
  3. Hi everyone, I'm a nineteen-year-old lurker who was just officially diagnosed with PANDAS last week after eight years of symptoms. I'm so relieved to have an answer and to finally have found a doctor that knows how to treat PANDAS... Anyway, I'm in an exacerbation right now. I'm taking 60mg of Prednisone/day as of Saturday, 600mg/day of Cefdinir, 4000mg of purified fish oil, and a probiotic, and I will be doing my first IVIG next week. In my last steroid burst two weeks ago, after three days, I saw almost complete resolution of depression, hypersomnia/PLMD, and concentration problems,
  4. Hello everyone, I'm 19 years old an have lived with an undiagnosed illness for eight years. Over the years, I've been given many different labels to describe the symptoms, but I've always felt that there was a deeper cause to explain them. Right now, the labels are OCD, Periodic Limb Movement Disorder, and suspected narcolepsy. My current symptoms are severe daytime sleepiness, fatigue, mild cataplexy, occasional hypnogogic hallucinations, multifocal myoclonus when I stop fidgeting, mental fog/concentration problems, intrusive thoughts, and recurring depression. I've had every blood
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