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

Welcome debi1167.

Someone will be along to help.

Debi,

It is great to have you come and be with us. You will find a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Sorry hear about your daughter, we mothers feel so much pain when a daughter or son come up with problems in the medical field.

Click on the found forums, there you will find some assistance. Just click on the following.

Autoimmune Diseases:
http://neurotalk.psychcentral.com/forum44.html

Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Welcome to the NeuroTalk Support Groups.

I'm sorry your daughter is going through such a terrible time with her health.
That certainly must be very worrying.

Here are a couple of other forums apart from the one Darlene has left you.

Peripheral Neuropathy Forum

Social Security Disability Forum

I hope this situation with the insurance company is sorted out soon and that
your daughter is on the road to recovery very fast.

Hi debi1167,

My daughter is 12 and has been through tough medical problems the last few years. I can empathize with your frustration and pain. There are great, knowledgable people here with enormous hearts.

I hope you find some answers and comfort here.

Hugs to you from another mom. Don't forget to take care of yourself too.

Jace