how to find university who sees patients

[helloos]

Hi all.

I was just wondering about this one. A lot of you suggest that you see a medical university where they study people and run you through everything to find out the problem........

I know I am 99% diagnosed with LUpus, but I am still not feeling secure about it and just wanted to see if this was something I could do.

The closest city to me is Boston, Massachusetts and they do have universities but when I go on their sites, there are none that give you that conclusion.

HOw do you find out without having to call twenty departments and schools?

[raggedyann1]

Paula,

Boston has lupus specialists at both the main hospitals. Brigham and Women is one and the other is Mass General I think, name could very well be wrong. The important thing is to find out who the lupus specialists are at both those places. One is too google each rheumatologist that is accepting new patients and see what papers or research they have been involved in. Phone call to the rheumatology department and ask which doctors specialize in lupus or connective tissue diseases, if you are told all don't believe them. Ask further which doctors are involved in lupus or CTD research. i think you are getting my drift now as to the footwork to make sure you get a lupus rheumy.

Take care,
Karen

[flowergarden]

First, go to the medical schools. Then look up the rheumatology department. Some of them might not have one. You could try immunology.

What I did then was get the phone number off the internet and call. It may take a long time to get an appointment, however.

Good luck. style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/flowers.gif

[Clare.T]

See

http://www.rheumatology.org/directory/city...tCare=&state=MA (http://www.rheumatology.org/directory/city.asp?hCountry=USA&city=Boston&cbxPediatric=&cbxPatientCare=&state=MA)


Google names of individual doctors for mentions of publications etc

Check out LFA chapters and call them - they don't refer but can give names and sometimes sneak in a recommendation unofficially.

http://www.lupus.org

Or you post on here for " lupus specialist Boston "

Dr Peter Schur is very well known and I am sure there are others. He's an immunologist too.

http://www.hms.harvard.edu/dms/immunology/.../fac_Schur.html (http://www.hms.harvard.edu/dms/immunology/fac_immunology/fac_Schur.html)

Cheers
Clare

[helloos]

Thanks for the replies.

I do like my rhemo...... I was trying to find a doctor more like the "HOUSE" the tv show. When no one knows what is wrong, you go see this doctor and they investigage and find out. It is probably not realistic. As I said my rhemo is treating me for Lupus, but I still have my doubts. So, I thought isn't there a study or something they take people and their problems and try to figure them out? I thought when you all were talking about the universities that is what you were talking about, I didn't realize you were saying to see a rhemotologist there.... my bad, sorry.

Thanks anyways!!

[flowergarden]

Paula, I hope you're not saying you want someone with the bedside manner of Dr. House! I think I know a few like that... I'll be glad to ship them to you, if you'd like.

Many years ago I was sent to a medical university endocrinology clinic with all my records in hand. Three docs looked at me and my records and proceeded to diagnose me.

I was treated according to that diagnosis for almost 10 years, until another endo. began to suspect that they had been wrong. He was right. My current endo. agrees.

The med school rheumy I recently had review my records then call me was very disappointing. I looked up his published research, listened to him at a symposium, and heard good things about how thorough he was. Yet when I talked to him he told me that in order to have NPSLE one has to have positive labs or imaging. I researched that pretty thoroughly and found that to not be true at all. Yet here is this "expert" telling me it is.

So I think taking the steps the ladies above have outlined is really good. Just don't expect a perfect solution. There is some luck in the process unless you go to one of the nationally known top docs.

I think every town needs someone like Dr. House--as long as he works with docs and not patients! style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/flowers.gif

[helloos]

Hah!!! style_emoticons/<#EMO_DIR#>/biggrin.gif style_emoticons/<#EMO_DIR#>/biggrin.gif style_emoticons/<#EMO_DIR#>/biggrin.gif style_emoticons/<#EMO_DIR#>/biggrin.gif

No of course not I don't want Dr. House's attitude or bed side manner !!! Just his brain !!!!

I wish there would brains here that continued on and on until they found an absolute answer.

I'll just stick with my rhemo...he seems knowledgable and has a good manner about things.

[JoJoMama]

Hi Paula!
I'm a newbie & am doing some research re Rheums, Lupus etc trying also to get a definitive dx if there is such a thing!
I am from western MA & my PCP told me to go to Boston no other help may I ask how your search haws been going? I've rather narrowed mine down to 4 @ B&W

Have you seen anyone there? Do you know of someone who has? It's hard to know who I should go to...

Let me know how you're doing OK?

It seems there aren't too many New Englanders...

TY
JosieB

[BEN BURTON]

I was wondering if this treatment and tests of lupus at universities takes place in the uk too? And if so does anyone know at which universities?

Thankyou

Ben

I was wondering if this treatment and tests of lupus at universities takes place in the uk too? And if so does anyone know at which universities?

Thankyou

Ben

[Clare.T]

In the UK, you would expect trials to take place at teaching hospitals attached to universities or with their own research departments.

There is no way that I know of to find out where UK trials are being run at any given time, as there is in the USA. Normally the consultant selects suitable existing patients for trials depending on what their treatment needs are. Often it's not so much a formal trial or study, simply a suggestion that you try out some relatively new treatment.

On the whole, only people who haven't responded well to tried and trusted therapies participate in trials for new drugs or new applications.
Most patients want to be as well as possible as quickly as possible, they aren't willing to be experimented on, and doctors are concerned not to overtreat.
Participants usually have to meet certain criteria : medical history, what sort of lupus, current medications and other things like that as well of course as having been correctly diagnosed.

What I am saying is, first things first !

Clare

[JAgirl]

I also have interest in finding a good specialist in New England since I live in CT. I'm somewhat confused about some of my issues. If you find someone please share.


JAgirl

[raggedyann1]

JAgirl,

Boston has 2 hospitals with lupus specialists. Mass General and Womens & Brigham. I don't know the names of the specialists but if you go to their websites and get the names of the rheumatologists you can google them to see which ones you would want to get an appointment with.

Karen