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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 LP yet, I think the results will be helpful if we can identify which auto-immune disease it is. We have definitive proof of neuro-inflammation. However, I'm getting sicker and sicker, ocd and psych problems including depression are getting worse and worse. I don't have it in me to put up a fight. Insurance has denied the first appeal very quickly. Said they will only cover for: ITP and PID. We have no other path to take, literally tried everything except this, and we trust Dr. C....... We can show that I've tried everything else possible, it's been over 10 years of going to mayo, shands, surgeries, many psychiatrists, alternative therapies, you name it - I've done it.......... don't know if this will hold any weight, but I have no other options. Thanks.
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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 – Approved Arkansas - Approved Washington DC Arizona Michigan Rhode Island Virginia Washington UK Minnesota Georgia Louisiana Florida Pennsylvania Ohio Connecticut Maine Indiana
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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 year marriage. I was recently granted medicaid but I have no idea what benefits I may or may not have. Any tips would be greatly appreciated. I have a ton of fatigue and daytime sleepiness so everything is a herculean task. It'd be nice to find an advocate but I've been unsuccessful after contacting several people online. It's all very very stressful for me. Thanks.
