Hi everyone -

I'm posting to possibly get more information to try to help my daughter. She has had multiple autonomic health issues and has had several different diagnosis'. Recently we found a fantastic doctor that finally listened and believed that her symptoms were not in her head. She had autonomic testing and has been found to have small nerve neuropathy and severe autonomic dysfunction. She has low blood pressure, high pulse rate, severe POTS symptoms, heat intolerance, stomach problems, migraines, among other things. Her doctor would like to try IVIG, but the insurance company denied her. They say there is no FDA approval or proof that this treatment would work for her. Without this insurance coverage, the cost is approximately $5000 per month for this treatment.

Has anyone had any luck in fighting with an insurance company to get this treatment covered for this diagnosis? I'm looking for any advise I can get at this point - she has no life. She's 18 years old and can barely get off the couch to go to the bathroom without feeling like she's going to pass out. I'm at my wits end and I just feel so helpless! We've applied for SSI for her but that is still a ways to go I'm afraid - it's a paperwork nightmare.

Any ideas anyone? Advise to give? Suggestions? Please help me