Update: Can't find local doctor to oversee ivig.

[Guest]

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.

[Hrosenkrantz]

Ophelia, congratulations on the insurance approval.

Are you looking for information on where you can get IVIG in Florida? I know of a mom in South Florida whose kid gets monthly IVIG there. I'd be happy to send you her contact information but you inbox is full...

[Guest]

No I'm looking for a doctor to monitor the ivig infusions, someone has to monitor even though I'd be doing outpatient at the hospital. I live in north florida quite close to the Georgia line so South Florida is way way far away. Insurance specifically said I can only get ivig locally, outpatient at a specific hospital, in my city. So I have to find a doctor here and have been turned away by 4 so far. All the doctors in my city are 20 years behind and very conservative and just generally terrible. So I can't get ivig out of town, I'm too sick to travel as well. AE alliance said there wasn't anyone here so we're in quite a bind. Maybe Thomasville, Georgia would be possible but that's even stretching it, insurance told us not to "rock the boat".

[Guest]

I just deleted a bunch of old messages, thanks for the heads up.

I think the major problem is of all the local doctors I've seen, none have ever heard of autoimmune encephalitis, so they are scared to treat me and scared of using ivig.

[mama2alex]

Have you offered to let them speak to the doctors who treated you at NYU? I don't know how this all works, but you'd think a local doctor would be willing to oversee a treatment prescribed - and already given once, with no problems - by an expert in another city.

 

Also, I don't understand why insurance approved IVIG at NYU, but won't cover it in a Florida town other than the one where you live.

[Guest]

They approved the loading dose at NYU since that's where my doctors are and Dr. C requested that. Then they approved all outpatient treatment locally at _______ hospital only. They would not approve in home infusions. So on top of everything it has to be a doctor associated with this specific hospital. I can't change the stipulations, I just need a solution to the problem. The female rheumatologist did speak with one of the NYU doctors but still didn't want to do it.

[Guest]

My insurance is a local HMO, which is part of it.

[Kayanne]

Perhaps you can politely ask the hospital administrators to recommend a doctor? If you have insurance approval, I find it hard to believe that the hospial would want to turn you away.

 

I think your Mother (of course) would know if this is a viable option or not. Good Luck.

[Guest]

Perhaps you can politely ask the hospital administrators to recommend a doctor? If you have insurance approval, I find it hard to believe that the hospial would want to turn you away.

 

I think your Mother (of course) would know if this is a viable option or not. Good Luck.

The 2 neurologists we tried were recommended by hospital staff, both reviewed my records and said they didn't want to see me. I think there is only 1 more neurologist that comes recommended and mostly they do ivig for MS and he has the horrible reviews online, he has my records now reviewing them but hasn't gotten back to us. They don't have many neuros coming to hospital for infusions, etc. so we need to find out if there are any other physicians doing this. We only have 2 rheumatologists, one is bad and said I just have depression and the other turned me away last week. Will see if my mother can ask more questions.

[Guest]

So a female rheumatologist who isn't very friendly agreed to do one infusion but she doesn't work at the hospital. I got a call and took a cab to the hospital thinking I would be outpatient. A female neurologist didn't show up till 9 pm, she wouldn't give me any of my regular medication so I was awake all night, she kept talking about needing to do more tests and mri's to actually check for inflammation, and she hooked up all this crap to me making it increasingly difficult to get to the bathroom and I told her I have severe IC and a lot of fear regarding my bladder - why do I need to be hooked up to stuff when I'm only there for ONE INFUSION. She said, "in the morning you can take your medication and get infusion", well I wasn't going to take sleeping medication in the morning. At 4:30 am someone came in to take 6 vials of blood, they dug around my veins and punctured a vein in my arm. When the morning came and I hadn't slept, they said, "You need a neurological consult, then we'll discuss whether or not you need an infusion", I waited all day and nobody came. My mom came by and got the impression that they were scared to treat me because of liability issues. I had to leave b/c inpatient isn't covered by insurance and they wouldn't let me sleep or give me my medication.

 

The next day I called a nice lady at my insurance. She said "we'll get you going with a local infusion center that is privately owned". I thought everything was squared away but now the infusion center says they need a doctor................ No local doctor will work with me especially the neurologists, they question Dr. Chong and Dr. Najjar, I even contacted a lady at Shands and she said "no way will I give you ivig, it has tons of side effects, and there is no proof you have AE". I keep telling them I didn't get any side effects!!!!!!!!!! So our only hope is that the infusion center will still do the ivig. I have no local help, support, resources, and I was mistreated at the hospital. I continue to decline and get sicker and sicker. I've had a uti for 4 months and they took away my cipro and said I need "proof of uti" but my urologist put me on a long course of it. I am stuck.

[Guest]

A local infusion center has agreed to help. They will work with my NY doctors.

Nobody locally (doctors) would help and the hospital wouldn't help, period. They don't want to deal with me and know nothing about AE or pandas.

[Hrosenkrantz]

So glad you got a local infusion cventer to help and work with your New York doctors!