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Found 3 results

  1. Someone was very kind enough to give me some names for ivig advocates from this forum, thank-you, however I have not heard back from them after emailing (they may be booked, busy). Thought I'd ask and see what other names might be suggested. I have read some on the jennifer jaff center but they don't seem to do advocacy just give information. Right now the diagnosis is clinical encephalitis with primary auto-immunity, along with secondary immunodeficiency, POTS, IC, etc; severe psychiatric problems that are resistant to both medication and ECT. We have not received results back from L
  2. Thought I'd post an update on which states have submitted applications for an Awareness Day and who has been approved. If anyone is interested in still applying, you may be cutting it close for a STATE proclamation, but CITIES do them as well. The city proclamations get processed much quicker, sometimes as fast as 24 hours. In case my photo doesn't come up... New York – Approved Illinois – Approved Texas – Approved Missouri – Approved Nevada – Approved North Carolina – Approved Kentucky: Louisville, KY - Approved , Lexington – Approved Wisconsin – Approved Maryland – Approved Tennessee
  3. Seems like my pans doctor is super busy and I'm having trouble getting things moving. I have to constantly make phone calls and only speak with secretary. Just getting the initial lab work was A HUGE ORDEAL. I was making phone calls constantly. We are supposed to do genetic testing but the insurance company won't approve it until the doctor sends them notes - so they've faxed him several times and I've called.............I don't know what to do. I'm really really sick not only with PANS but M.E./CFS and my mom just cannot help me as she is going through a divorce / separation of 30 ye
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