Dutch doctors failed, I'm going to the USA for a complete checkup

[JannaLee]

Brainfog,

It is nice to meet you.

I just wanted to add, for what it's worth, I think the hospitals that Victoria recommended are top notch and I would feel comfortable using them, especially John's Hopkins in Maryland.

As to the supplements, who knows if they played a part in your illness.  I've got autoImmune disease and never used the powder.  Try not to feel bad about it, my friend, because no one knows what causes this and it will just drain your already limited energy.

You will find a whole lot of people here who understand how sickly you feel, and also your frustration trying to find a diagnosis!

Best to you!
Janna

[Epson]

Brainfog.

I think if you can get a good dx you will find that you don't have all of the things you listed, or at least I hope not.  I can relate to the knee and lower back pain and if your into heavy physical activity these parts of the body along with the wrists really can hurt.

I had to give up using my heavy bag and weights, too much stress on the joints and I am a lot older then you which doesn't help.

Every year U.S. News and World Report ranks U.S hospitals ( you can look it up online) the top ranked hospitals for rheumatology are  #1 Johns Hopkins, #2 Cleveland Clinic and #3 Mayo Clinic, I think if you stay in the top 10 you can't go wrong.

[allium]

Hi BF:

I can add to other's suggestions with recommending you gather copies of ALL of your medical records, and have them in your possesion if needed before travelling to the US.  Many treatment centers and other specialists will demand them for review for appointments, even to make appointments.  Most people have a central doctor in the US (general practitioner, family doctor) that will have records and help with referring patients to specialists.  Often, it's the case for insurance companies to require a referral for payment and treatment.

While in a perfect world, these primary care doctors should have all your records of tests, treatments, and fax them when needed.  Many of us deal a fragmented health care system that malfunctions from inefficient communication between doctors those who should refer and don't (and don't care), as well as medical personnel that should send records and don't.  We are often given a hard time with stalling to get copies of our own records, even with by law saying we have a right to them.

Medical insurance liability issues tell everyone how high to jump.

You can self refer yourself to receive treatment, and some places let you do that.  Just be prepared to have to provide lots of background info, and any records of tests, treatments and results as much as possible.  You may have a longer wait to get in to see someone without another doctor's support.

Have you come across any particular doctor in the NH that is supportive, and on your side (anyone)?   Narrow down your choices, and call the facility you choose to find out what steps you need to take for an appointment.  Ask this medical professional if they would help you with getting an appointment, be it a letter summarizing their ideas of your condition or sending records.

Good luck.
Sheila

PS: A "quack" is a faux/bad doctor. Maybe has a medical degree, maybe not (but call themselves Dr. like Dr. Phil, as if you would know who that is!).  They put on a show of knowing what they are doing, but they often know little and do more harm than good with poor and ineffective treatments.  Money is the object, not helping the patient.  That part seems to fit most doctors these days.

[Chickpea]

Hi Brainfog

I'm in the UK so I don't have personal experiences of doctors in the USA, but if I were you I'd do some thorough research before parting with a penny.  There are some excellent specialists in the UK and you'd be entitled to see them c/o the reciprocal medical agreements within the EU.  It might be worth considering that before spending huge amounts of money on a long trip to the USA.

If you do decide to go there are some good research articles on this web site which give you some idea of who is researching which aspect of SJS and related AIs.  Dr Birnbaum at Johns Hopkins in Baltimore specialises in SjS with central nervous system involvement. He is very happy for people to email him with queries, and also to see them at his clinic.  Other people recommend Dr Vivino who has links with another SjS group.

It's also worth considering who will supervise your long-term care back home in the Netherlands.  You need a good general doctor who understands the condition, as well as a rheumatologist who will monitor your treatment. 

Hope you find the answers you're looking for.

Take care - Chickpea