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

[brainfog]

Hi,

I'm a 25 y.o. male from the Netherlands with a lot of health issues. For the last three years i've visited countless doctors in various hospitals, but they can't seem to figure out what my exact problem is. Well, i think they can, but thorough examination costs money and that way they risk their health insurance bonus. I've totally had it with the Dutch health system, they only help you when simple tests show you are sick. If it's more complex they just say we can't find anything, please come back in a year.

I've decided to visit the USA to get a thorough examination at a private hospital or specialized auto-immune clinic, but where do i have to start looking? I don't care if i have to visit one specialist in LA and one in New York the next day. I want to go to a clinic or hospital where they keep examining me until they find out what is wrong with me.

My health means everything to me. I've practiced bodybuilding since i was 18 until the health problems started to appear. DIeting and working out was no longer possible due to:
- Weight loss ( i lost 27kg of muscle tissue the last 1.5 year!!! From 84kg to 57 kg now, i'm 175cm tall that's about 5'7)
- Hypoglycemia
- Brainfog
- Joint ache (knees and lower back)
- pressure and stings on my chest (heart zone)
- dry eyes
- dry mouth
- hair loss (probably alopecia androgenetica)
- extremely dry skin. My skin itches and is very sensitive. I get rimples all over my face and body because it's so dry. It looks like my skin is degenrating!
- gynaecomastia

I think i have Sjogren's, coeliakie, lactose intolerance and caffeine intolerance.

These symptoms keep getting worse. I'm really freaking out right now, so any help or suggestions about which clinic or doctor to visit are welcome.
I'm planning to visit the USA in July and stay there until they figured out exactly what's wrong with me.

[Scottietottie]

Hello Brainfog 

Welcome to Sjogren's world.  It's horrible to be feeling so bad and not to be able to get the mediacl profession taking it seriously. have you even had any of your symptoms treated? have you been given meds to relieve the dryness at all - or anti-inflammatories/painkillers - for the joints?

I'm in the UK so I can't advise about the US.  I wish you the best of luck in your search for answers. Hopefully you may find some in here!

Take care - Scottie 

[Linda196]

Hello and welcome Brainfog.

I'm so sorry you're having such difficulty getting a diagnosis, but, since you feel you have symptoms leaning toward lactose, caffeine and/or gluten intolerance (coeliakie = celiac I believe) have you tired to eliminate these things on your own to see if there's an improvement? That in itself might give a doctor something to go on, if they know that there's a change in symptoms when certain substances are avoided. Unfortunately, if you are going to be formally tested for those things, you have to be ingesting them for a period of time before the tests, in order for the tests to be accurate.

I'm not in the US either, so can't recommend any clinics, but I'm sure there will be several recommendations, when our American friends see your post.

[jonnell]

Hi Im from the US Jersey to be exact.  I hear that John Hopkins in Baltimore Maryland is a excellent place.  My 4 year old goes to Dupont Hospital in Deleware the only reason I dont take her to John Hopkins is because Dupont is a Childrens Hospital and I love my daughters Rhumy.  I think the they specialize in SJS.  But the US is like every well else you have to be your own advocate.  I had to demand tests for Jenna because I believed she had Lupus (thru my own research and her symptoms)  It turns out it is SJS.  Everyone was saying she just has a viral infection  she had a allergic reaction to penicillin and our local er said it was chicken pox(and they wonder why I go out of state for Jenna.  Good Luck     Hugs and Kisses   Jonnell and Jenna

[Katybarstool]

Hi

I'm sorry to hear you are struggling so much. If you were to consider the UK, I know that Simon Bowman in Birmingham and Elizabeth Price in Warwickshire are considered specialists in SJS. They are medical advisors to the UK Sjogrens organisation.

Kathyx

[Victoria05202000]

Brainfog, sorry to hear you are having trouble with your health system. We have some quacks here...so do your research.    I know I would go to a University hospital (a teaching hospital)  I go to MUSC in Charleston, SC and have been pleased. They don't have a sjogrens clinic though, but they also have an awesome  rhuematolgy and nephrology dept.  I am getting my kidney transplant done at MUSC too. They are #1 in the country for kidney transplants success rates. (although that might be because they are extremely selective on who they help)  The Cleveland Clinic , John Hopkins, Duke, Emory, MUSC, and Boston General are a few reputable good hospitals on the east coast.

I wish you luck with your journey. Take care!
Vicky

[brainfog]

@ Scottie,
The eyedoctor only prescibed me artificial tears. My tearproduction is sufficient, but the chemical composition is out of balance. My tears dry up within 3 seconds. I've requested a tear analysis in the laboratorium but they denied it. I want to know exactly why my tears dry up within a few seconds, probably the lipid layer is insufficient, or it has to do with some kind of androgen deficiency.

@Linda196.
Yes, i've been 6 weeks on a gluten-free diet, no alcohol, no caffeine, no lactose, i felt a lot better after a few weeks so i reported it to my endocrinologist, but he just said okay.... good for you. No check for gluten intolerance, nothing.

@Jonnell.
I've heared about the Hopkins hospital as well. Any others here recommending that hospital?
I guess your family has a healthcare insurance too?
If i want to get my checkups in the USA, then my healthcare insurance doesn't pay a cent. I've to pay everything myself, but i'm fortunate enough to do that. I feel very sorry for the millions of people in the USA and Europe who are dependent on their healthcare insurance and do not receive a proper treatment.

@Victoria
What's a quack?  It's really great that you found a good team of specialists. Did your kidney fail because of SJS?

@katybarstool
Thanks for the recommendation.

First what i'm going to do is visit the immunologist, if that turns out to nothing again then i turn my back to the dutch hospitals forever.
At the end of this month i'm going to visit a preventive scanning clinic in Germany. They scan my whole body with MRI and CT, do bloodwork, check my stomach, colons etc.
After that, in July, i'm going to the USA and "hire" a (part-time) private doctor, who will dedicate his time to help me with my diagnosis and forward me to specialists.
I know they have this kind of healthcare in the USA, but i have no idea where to find it. Money is no problem, my health means everything to me.

[missyb]

Brain Fog,
I sent you a PM, but I had another thought, you mentioned you are a body builder? Are you using a lot of those prepared protein powders by any chance?
Missy

[lighthouse33]

If I remember correctly a gastroenterologist is the doctor who does the testing for gluten intolerance and celiac disease.  At least mine tested me for celiac.  They also do the testing for lactose, sucrose, bacterial overgrowth and fructose intolerance.  These tests are called breathing tests.  It took several months for my results to come back because it had to be sent to a lab out of state.  You mix up the powders and then drink it and then do the breathing test into tubes  The test for celiac I think was some sort of blood test.  I believe (could be wrong) for celiac and maybe the others you have to be eating the particular foods in the diet that cause the intolerance otherwise you will test negative.  So it is important to continue eating them until after the testing.  I know that once I found about my fructose intolerance, I've been a lot better since I've cut fructose out of my diet.  It basically leaves me eating nothing but at least I'm in less agony with my stomach.

[brainfog]

Brain Fog,
I sent you a PM, but I had another thought, you mentioned you are a body builder? Are you using a lot of those prepared protein powders by any chance?
Missy

Hi, i did use a lot of protein powders before. I can't use those powders anymore because it gives me heartburn and diahrrea, like all dairy products.

[brainfog]

If I remember correctly a gastroenterologist is the doctor who does the testing for gluten intolerance and celiac disease.  At least mine tested me for celiac.  They also do the testing for lactose, sucrose, bacterial overgrowth and fructose intolerance.  These tests are called breathing tests.  It took several months for my results to come back because it had to be sent to a lab out of state.  You mix up the powders and then drink it and then do the breathing test into tubes  The test for celiac I think was some sort of blood test.  I believe (could be wrong) for celiac and maybe the others you have to be eating the particular foods in the diet that cause the intolerance otherwise you will test negative.  So it is important to continue eating them until after the testing.  I know that once I found about my fructose intolerance, I've been a lot better since I've cut fructose out of my diet.  It basically leaves me eating nothing but at least I'm in less agony with my stomach.

I've to visit a gastroenterologist, dermatologist, endocrinologist, rheumatologist, immunologist and optomotrist to get a proper diagnose for all my symptoms. With this healthcare system it will take years to get an appointment with each one of them.
I hope i can do all the tests you mentioned when i'm in the USA.

[missyb]

Just keep in mind that those gastro tests will only show if you are specifially allergic to dairy or gluten, they won't show an intolerance or increased immune response which will aggravate an auto immune disease..
Also, BF, another question, have you been doing lots of different things to boost your immune system to try and heal yourself?
Because in the beginning I did that, I was told by know it alls in the family I just needed to take hot baths and supplements to "boost" my immune response, but I found out later this was a huge mistake because my immune system was overstimulated already and I was making ti 10 times worse.

[missyb]

also, btw, the reason I asked about those protein powders is because they*usually* contain artificial sweeteners and those chemicals are also bad for stimulating your immune response and should be avoided.

[brainfog]

Yes, i've used tons of supplements when i was still working out. Experimental supplements, supplements which are now banned etc.
I was never sick and i was in top shape until the missery began.
Some months i used $400 worth of supplements.  just for that extra pound of muscle. Maybe the over the top usage of supplements caused my auto-immune system to go wild.
Now i only use a strong multivitamin, vitamin C 1000mg, fibers, omega 3 fish oil and a clean diet.

[Boroboy]

Brainfog,
Sounds like you may be suffering from arthritic condition, Sjogrens may be a secondry issue.
Have you been tested for a Spondylitis? Possibly Psoriatic Arthritis? I'm not a mediacl expert though.
I suffer from Ankylosing Spondylitis, from the age of 21, wasn't diagnosed until I was around 25 (not uncommon).
Couple of links for you, may help:-
http://www.spondylitis.org/about/main.aspx?YYZ=NAV02
http://www.kickas.org/
Best wishes.
George.