The MSO forms include a creditcard authorization form, as apparently it's going to cost money from this point onwards. Sadly I do not have a creditcard, nor the means to pay if I had one. I forwarded this email to my health insurance company and see what they can come up with. Sucks that things are grinding to a halt for a while again due to financial issues
Update: I emailed JHM a whole pile of reports and scans this morning, and gave them the contact information of my insurance company. They'll have to figure it out from there, I guess. The Medical Second Opinion (MSO) forms I had to fill out mentioned that a second opinion usually costs somewhere between $800 and $1,500. Seems fairly standard. I'm pretty sure that I have run up a far higher bill at the Dutch hospitals during the past 6 years
Got another email from Del: My own email preceding it: I was kind of shocked to learn but not totally surprised that Del got treated that way at the Middlesex clinic. Apparently the UK medical system is no different from the Dutch one. Same uncaring attitudes, same lack of professionalism, same cruelty. It's not easy being IS, I guess Thank the Heavens for JHM.
I would agree on the lack of professionalism to some extent, but how realistic and helpful is it for you to interpret the medics' behaviour as uncaring and cruel? Doctors are trained to believe that they have all the answers. Some therefore may believe that if they don't, the question is not worth asking. But that is because we place this heavy crown upon them: to cure all our ills and fix all our physical problems, no matter how complex or inscrutable. We don't want to hear "I don't know" for an answer. Del sure didn't: If you just want official acknowledgement that you are IS, then I'm sure some doctors will be able to oblige, because that part is relatively easy. If you want anything more complex beyond that, I think it is unlikely that they will be able to tell you. The important bit to focus on, and talk with Del about is:
Well, my insurance company just told me that they're rather see me waiting 1+ years on the UZ Gent in Belgium than pay up for even the MSO at John Hopkins: http://mayaposch.blogspot.com/2011/03/response-from-insurance-company.html Time to start borrowing money from friends =/
Brief update for those who haven't been following my blog: I managed to borrow money from a friend, the Dutch medical reports have been translated to English and JHM sent my case off to the Medical Director. I expect to hear more from them the coming week.
http://mayaposch.blogspot.com/2011/04/surfin-usa.html So two days ago I got an email from JHM informing me that two medical directors have looked at the translated documents and other data, and concluded that they can not draw a conclusion based on it, thus my case has been forwarded to International Patient Services to arrange an in-person appointment. In other words I'll be going to the US for medical examinations, the details of which I'll hear soon
About time you had some good news to distract you from all of those annoying emails that someone keeps sending you
Tell me where you're going in the us and I'll see if I know a good geneticist-mine is at the kirklin clinic in birmingham, al. If you do end up going there, well see about taking you around to see the sights-both the popular and the best kept secrets. Alabama has some surprisingly good programs.
Got scheduled for an appointment with a urologist on June 27th. No further details given. No assurances. I am expected to pay for an hotel room, as well as for any medical expenses. I really do hope they can provide me with something better than this. Right now they have only managed to trigger my PTSD pretty severely. Fighting suicidal urges isn't fun.
Sent an open letter to my current coordinator at JHM: http://mayaposch.blogspot.com/2011/05/my-appeal-to-john-hopkins-medical.html
"Insanity is doing the same thing over and over again but expecting different results." --Rita Mae Brown You have to stop setting yourself up for disappointment. Only you have the answer that you seek.
