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Update: Can't find local doctor to oversee ivig.
Guest posted a topic in PANS / PANDAS (Lyme included)
So over the past couple of months we worked really hard and ivig was approved for the diagnosis of autoimmune encephalitis. I had to go back up to NYU for a week inpatient, and it was the hardest thing I've EVER DONE because of how sick I am, how bad my bladder is, and how bad the ocd is. I came home expecting to get back to ivig but there is a HUGE HICCUP. I am only approved for ivig at one of the local hospitals (the main one where my mom works) but we cannot find a doctor to manage and oversee treatment and any potential side effects, even though I tolerated ivig better than any medication I've ever taken. We saw an: immunologist, and rheumatologist and they refused to take on my case. Then I was referred to 2 different neuro's and they both refused to see me. They all say they've never heard of AE and can't help and all seem scared and worried. I contacted doctors at nyu and they don't know anyone in the south except duke which is 9 hours away. I contact AE alliance and they said there's nobody in my area. Insurance will only do LOCAL IVIG AT LOCAL HOSPITAL. My bladder and ocd are getting worse, they feed off of each other. My mind is now telling me that all these things are bad there's a huge list of things I can't do according to ocd so it leaves me with essentially nothing to do. I feel like I can't go on even another 6 months to try treatment, it's just that bad. Bladder keeps me from having any enjoyment or sleep or rest in life. Insurance has denied botox treatment and I've tried everything else for IC. OCD latches onto everything I enjoy and tries to destroy it, I can't even watch t.v. or movies so there's nothign I can do but sit in a chair all day and lie in bed, can't listen to music either, it's out of control. Have therapy helped anyone? My psychologist is great but nothing has helped with ocd in past 5 years that we've tried.