I'm going to special Sjogrenscenter, yes!

[Gonzo]

In the Netherlands, in the north, we have an university hospital with a group which is specialised in Sjogrens. It's not easy to go there, because another hospital has to refer you. And my internist is going to that, yes! The reumatologist didn't think it's Sjogrens, the internist thinks it is so they both want me to do a lipbiopsy. But I have read so many stories that a lipbiopsy sometimes creates a numb lip, so I did some research. And guess what, that university hospital does it differently. There they pcik a gland just below your ear (is that correct english?). The procedure is annoying but later you have no more problems. So I kept saying that I was only doing a biopsy in that hospital. And so now they send me through. I'm glad, because they see only those with Sjogren. So there they will know if I have Sjogren beginning or that it really is not. Very nice. I had to tell you guys. sorry ;-)
Take care you all!Hope you have a good weekend with no pain and lots of energy!
Stans

[A66eyroad]

What wonderful news! I'm so excited for you, can't wait to hear all about it! Let us know as soon as you hear when your appointment will be.

Is the Sjogrenscenter close to your home?

[Gonzo]

Netherlands is fortunately a small country. From north to south you can ride in 4 hours, without traffic jams. But we have many traffic james :-( I live in the middle, two hours away so if I do not have to drive during rush hour. Our notions that is far. In America, they think it might otherwise;-)
I'll let you know. It's a long waitinglist, but I'm patient. Becuase if it's Sjogren, they really can't do a lot.

[A66eyroad]

Yes, distance is a relative thing, isn't it? I'm driving to see my family in south Florida tomorrow -- a 13-hour drive! A two hour drive is considered practically nothing!   

They may not be able to do a lot, but hopefully the can do something!

[meow]

LOL, we are leaving tomorrow from El Paso to the Navajo Reservation. By the time we return Monday night, we will have logged in close to 1000 miles. First stop is Albuquerque, 350 miles away. That's just a few hours, there before lunch!

I once heard someone say that the difference between Europe and America is that in Europe they think 100 miles is a long distance, and in America they think 100 years is a long time.

[bloodless]

I'm so happy for you. Specialists in sjogrens can tell you if you have it even if your biopsy comes back negative. My lip biopsy did and it was some time before I was diagnosed, because they thought they had ruled it out. Sometimes the docs are forced to look at the full picture of symptoms over long period of time.

Meow, I like your difference between Europe and America anicdote. So true.

[Gonzo]

Thank you for all the kind responses!
And I like the anecdote from Meow too. She wrote: "I once heard someone say that the difference between Europe and America is that in Europe they think 100 miles is a long distance, and in America they think 100 years is a long time."
It's so true I guess. For example the house I lived in before this house was from 1850. When I lived in that house I was in new York doing that boattrip around Manhattan and the voice out of the speakers spoke: Look at your left and you see a house which is 70 years old and al the Americans, wow! My friend and I had to laugh as you can imagine. But I'm glad we don't own that house anymore. We were always working on it ;-)
But driving 1000 miles in a weekend... no, we are not used to that. I think I would go by plain. Still, have a good weekend!!

[valene2009]

wow Gonzo. i am so happy for you! i wish we had a place like that in the states but that is awesome.. good luck and keep us posted on what they tell you!!

[valene2009]

by the way Gonzo--- 1000 miles wont be too bad... when i moved from the midwest to California it was over 2000-drove there and 9 years later drove home...  look at as an adventure!  im really excited about this place for sjogrens you are going too.. cannot wait to see how it goes for you and what info you get... I'm glad there is such a place..hopefully the states will get on the ball too!`

[Joe S.]

I drove to CA then up to BC and back home to MN for a nice trip of over 5000 miles with a few site seeing side trips. The goal was to babysit the grandsons for two weeks.

[Skylar]

That's great news - nothing like seeing the doctors who specialize in Sjogrens. Good luck.

[soycoffee]

Hi, Gonzo

That's good news about the specialized Sjögren's center in the north of the Netherlands. I spent a few weeks as a student in Leiden, and loved it, so I want to ask "North of where?"

Contrary to some posters in this thread, we do have two specialized centers for Sjögren's Syndrome here in the states, but you would need to come to the mid-Atlantic area of the east coast for them. They are in Philadelphia, Pennsylvania, with the University of Pennsylvania's Penn Presbyterian Medical Center, and in Baltimore, Maryland at Johns Hopkins University Medical Center. I think the distance between them is less than 200 miles.

In contrast, in the center of the western U.S. Mountains is the city of Salt Lake City, where people who need specialized medical treatment drive or fly from Montana, to the north, or the Navajo reservation to the south, to reach the University of Utah Hospital /Medical Center. That's a fast 10 hour drive, by a relative or a friend, not by the person who is sick, and there's no Sjögren's Syndrome Center there.

Let us know how you are doing. Do you translate the names of medicines and over-the-counter stuff from American (or Canadian, or Australian, or British) trade names into the names used by Dutch pharmacies in the Netherlands?

How long until your appointment at the Special Sjögren's Center?

Best,
Soycoffee

[Meld256]

Gonzo,

That is wonderful news! 

We're always glad to hear of anybody being able to get specialized treatment that may be of real benefit.  Please keep us updated.  I didn't see if there was a time-frame?  Do you know when you will go?

Take care,
Melinda

[annken]

this is great news!
aw i was working during the vacations in cologne when i was a student and came back to ireland via Amsterdam, where i wandered for three days with a loaf of bread and a pack of salami!
shipped all my money home before me i loved it, absolutely.
would love to go back for a visit.
i was captured by holland.
i went to the Lupus Centre in Tooley Street, London and was seen by Prof. Graham Hughes, aka 'hughes syndrome; which is named after him.
he diagnosed me instantly with the schimmer test, think thats how its spelt and then it was confirmed through bloods.
i was so grateful to meet someone who didnt just say 'all in the mind'
i had to get a consultant here to sign to send me over, for i felt i would die if i was left as no one knew what was wrong.
i go back to the lupus centre yearly, and all the time they say 'oh My! do you remember when you came here first? you were a mess!'
i was and in a wheelchair, and couldnt get out of the wheelchair, now i walk in on sticks but i am very grateful for professionalism.
no one should be passed by when very ill and eveyone knows their own bodies, too well, to be passed over.
best of luck and hope the wait isnt too long.
i have a new worry, a lump in my breast which will be examined more fully on monday, so i am now a bit anxious on that.
maybe when over all that, i will trip to amsterdam eh!
xann

[susanep]

This indeed is great news. I sure hope you get all the help you need. Yes, please let us know how everything goes.

susanep