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About PianoGirl

  • 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 I’m having tremendous difficulties understanding my textbooks and assignments. It is not the material so much as the words themselves. While I do have some problems with concentration, no matter how hard I focus on a sentence, I just can’t grasp what it says. I read the words fine, but I cannot explain to you what the sentence as a whole means. It feels the same way it felt when I was learning a foreign language a few years ago and trying to make sense of a written passage—I would read it once and maybe catch the gist of what it was saying, but I couldn’t quite comprehend the full meaning. I have to break things down very slowly, word-by-word, and eventually, I understand what it says. Once I get past the words to the concept, I’m fine. Anyone else seen or heard of any of this? If so, what has helped make it better? As it is, I’m three weeks post-IVIG and taking Cefdinir, Prednisone, ibuprofen, fish oil, and vitamin D every day.
  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 the first burst. While I generally feel like I am fully present and mostly myself, I still have problems with OCD, anxiety, concentration, chorea, and reading comprehension--though sadly, this is a major improvement from two months ago. I guess what I'm saying is that steroids don't always do the trick. Hence the IVIG (or PEX, though I haven't had to try that one yet). As for the appetite thing, I get that, too. I couldn't eat normally for months until treatment and was malnourished and had lost around 10% of my bodyweight by the time I saw my PANDAS doc. I almost always get stomach problems and lose my appetite when I'm in a flare. My doc told me that eating/stomach issues are a very common PANDAS/PANS symptom. I don't know if it's because we have ulcers or what, but I think it's not unusual. Has your appetite been any better on abx? Strangely, I've had very little stomach issues lately even though I've now been taking 1600-2000mg of ibuprofen every day for a month. If anything, they've been better. It makes me think the stomach things (at least for me) are more a matter of inflammation than a separate condition... One of my doctors told me that I shouldn't have hearing loss from using ibuprofen short-term. Plus, the subjects in the study above were much older, so it's less likely someone my age would react the same way. I hope you find a treatment that works for you! Good luck.
  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, and I had major improvement in tics. But this time, I'm not seeing any motor improvements. If anything, the movements are worse. (But I also woke up with a slightly sore throat this morning... ) I have horrible chorea and tics, and right now, only Ibuprofen calms them down. Unfortunately, I recently found a study that says frequent Ibuprofen use increases the risk for hearing loss in women. http://news.harvard.edu/gazette/story/2012/09/pain-relievers-increase-hearing-loss-risk/ Have any of you hear about this? Have you heard of any way to negate this effect? I need my Ibuprofen. I'm in a terrible place because I'm a professional musician, and even slight hearing loss could be devastating to my career. But my chorea/tics are so horrible that I can hardly walk without falling down sometimes, so I need the relief. Should I just get a cane and sweat out the movement problems until IVIG starts to (hopefully) work in the next few months? Should I risk Ibuprofen? Is there a suplement you know of that encourages blood flow to the cochlea or that has similar anti-inflammatory properties to Ibuprofen? Thanks for your help. This forum is a pretty awesome resource!
  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 test imaginable, and they have always come back normal—until now. I had a Cunningham panel done in December with the following results: Dopamine D1: 8000 (normal range: 500-2000) Lysoganglioside: 320 (normal range: 80-320) Tubulin: 4000 (normal range: 250-1000) CaM Kinase II: 114 (normal range: 53-130) They had a shortage of the reagent for D2, so I don’t have those results yet. How do I interpret all of this? The report didn’t say anything. Also, blood work I had in March that tested for inflammatory markers came back normal. Unfortunately, none of the numerous doctors I've seen lately have known what to do about my numbers, and I don’t know what to do anymore, either. After eight years, my symptoms continue to worsen, and I’ve had enough. I had no health issues until a sudden illness at eleven that started with extreme fatigue, which is very suspicious to me. I've been researching on my own, and from what I can decipher, elevated D1 antibodies (which I have) are associated with OCD, Narcolepsy, and PLMD. Can anyone confirm this? Have any of you with PANDAS diagnoses also had Narcolepsy or other sleep disorders? Although I’m almost cured of OCD compulsions thanks to ERP and CBT, my other symptoms are debilitating, and I don’t want to be sick for the rest of my life. Do you know if any of the treatments for PANS or PANDAS can help with the fatigue and narcolepsy? And is there any point in antibiotics or IVIG after having this for so long, or is the damage to my brain likely permanent? Any words of advice you have are very much welcome and appreciated. I know you’re not doctors, but I’d be curious to hear about any of your similar experiences and anything that has helped. Thanks!
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