I want to ask for advice on what to do next and VENT about what happened to me at my neurologist appointment.

I went to see a neurologist referred by my PCP. I was a self-pay.  A medical student (that is what it her ID badge said) first came in and listened to my story taking notes for a few minutes and then did some neuro testing with closing eyes and pointing the finger, etc.  Then she left and the neurologist came in.

She did do any testing just said "Oh, classic CH symptoms" and didn't ask me any questions.  She sighed and said " Oh, you don't have any imaging done?" I said, "Oh, I don't even have any blood work done at this point"
She said "It is not necessary, it's classic CH case. We just need to break the cycle" Then she added "You are self-pay? We don't need to do imaging now, it is more stress for you". I said " Well, if it is needed, we should do it regardless if I'm self-pay or not. Also, do I need any blood tests?. She said, "No, it's classic CH"

Alright, after 10 min of this kind of conversation she gave prednisone prescription and xanax to cope with being hyper while on prednisone and to be taken if needed. 

I go to the check-out desk and presented with a bill of $465!! My face lit red from anger and shame.  Really??? Was such appointment even worth the money?  My PCP could have done better at a fraction of the cost. My PCP wanted to order tests but assumed that Neuro would take care of that...Why can such treatment by neurologist be considered that the person did her duty/job? When you hire a contractor or have someone do service for you in business world, and if you are not satisfied you can rightfully ask them to correct his/her work or redo it, if it is totally wrong.  Why can the same rule apply to doctors? I feel like the appt was some kind of scam.

Is is a proper neurologist visit as it would normally go?  I want to rule out any other possible causes of what is happening to me as I have my family to live for and be there for them. It sucks that the CH started that one time when I have no insurance but it doesn't mean that I can be pushed around.  I just don't want simply an abortive medicine.  I want to know and get a peace of mind that at this point there is nothing that could lead to anything worse than CH. 

I don't want to find out in a few days, weeks, months that if only I would have been examined more thoroughly something worse that CH could have been avoided.

I do really hope that I just have CLASSIC CH with no serious underlying causes. I just wanted to share my experience and vent.

Marsi, I can certainly understand your frustration. I think the neuro was trying to save you money, despite how expensive the "diagnostic" appointment was in any case. The prednisone is standard, not sure about the Xanax. I have no advice except to follow up with your PCP and share your concerns there. In the meantime, I am praying for your pf days and nights. blessings. lance

Marsik.. Welcome to the world of CH and neuros..  ::)

Most of us have been there and have the t-shirts to prove it. Personally I've fired more neuros than you even want to know about. And spent a fortune doing it.

But I finally "lucked" up on one who's wonderful and caring and have been with him for about a hundred years now. So sometimes it just takes a lot of looking before you find the "right" one. But there are some good ones out there.

BUT, you MUST be your own advocate. ASK questions - How many CH patients do you treat?  What do you usually do for CH? What about O2? Etc.. Have your questions ready.. And if they get snippy when you ask.. LEAVE.. (and I wouldn't pay them if they're not willing to answer my questions.. You wouldn't pay a contractor if your ceiling fell down now would you?)

But do your research before you go in.

And you come here and vent any time you like.. That's what we're here for.  :-*

It is frustrating.

I know it feels like a sham, but it is real. They really do hit you on the knee, have you walk a straight line, and ask a lot of questions at the first visit.

I hope you find some relief and your mind eases.

Charlotte