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Thread: Teaching Hospitals - Your Experiences

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    Default Teaching Hospitals - Your Experiences

    On the same line of thought as my ranty post, has anyone here had any luck with going to a teaching hospital for diagnosis and/or treatment options? I live in a small town, I'm not diagnosed with anything specific beyond "this is an autoimmune, connective tissue disease," and my doctors have started to routinely bring up going to a big teaching hospital in a big city for evaluation.

    I feel like I've had about every blood test and procedure on the face of the planet, and I'm not sure what added value making the trip to a big medical center would have for me.

    So, does anyone have any personal experiences with going to a large teaching hospital for evaluation or diagnosis or treatment? What was your experience? Were you glad you went? Was it a waste of time and money? Did you get any improved treatment options or a more firm diagnosis from going?

    Thanks in advance for your input!

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    No one has been to a teaching hospital?

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    it is sometimes quiet around here.
    i know a few people have mentioned before that they have been to teaching hospitals.
    please be patient.
    wekends can go extra quiet.

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    Teaching hospitals are like everyplace else. Sometimes people have great results with them and sometimes they don't. It all depends on the doctors you get and the policies that each particular hospital has about diagnosing AI disease. The one I went to had very strict bloodwork requirements to diagnose Lupus and, at that time, I didn't meet a couple of them although I did meet several and I had 6 or 7 of the 11 requirements for diagnosing Lupus. Others here have had really good luck with teaching hospitals because they ones they went to were very understanding and open to the fact that some Lupus patients present differently than others.

    I say give it a try. It can't hurt
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Thanks for replies, y'all. Sorry to be impatient. I'm not feeling well, my doctors (I'm in a small town) are at a loss and want to refer me to the teaching hospital (it's not my idea, and I don't really want to go), and I think -- being stuck on my couch most of the time -- I'm clinging to the internet to help me figure out a way forward. Because I'm honestly lacking hope that a teaching hospital or bigger medical center can do much for me. I feel like I've had every test under the sun.

    Tgal-- what I suppose is a little different about my situation is my doctors don't want to refer me for a lupus diagnosis. They think I might have something they've never seen in my little town, called Hypocomplementemic Urticarial Vasculitis Syndrome, which is a systemic vasculitis. I've been feeling worse lately despite the Plaquenil, and my rheumatologist wants me to go to the big city to see the doctors who see more weird stuff (seriously, my doctors keep calling me "weird;" how comforting) to see if they can come up with a diagnosis or at least give the thumbs-up on him trying a new drug, something called Imuran.

    Anyway, I'm just unsure it's worth the time, stress, and expense. I'm not dying. I don't know what another consult would do for me, but I was wondering if other people out here in the internet had been to teaching hospitals with weird symptoms and lab tests and had a positive experience.

    Thank you both for responding.

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    I say go for it. I thought the question was about the teaching hospitals tthemselves and that is what I answered about but if it is more about changing doctors or going to new ones to get answers by all means do that! That is what we do. We push on until we find out something. It my or may not be Lupus that you have but whatever it is needs to be treated and you have the right to find a doctor that will help
    Mari

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    Sorry, should have been more clear! I am definitely curious about people's experiences with referrals to large medical centers generally, but I guess the more specific question is whether people think the referral was useful or had added value. I really love and respect my local doctors, and I'm trying to understand what a big city hospital would have that they don't. I suppose just more brains on the issue and more experience with unusual conditions?

    But you're right. I do need to get proper treatment. If it is HUVS, I know it can damage kidneys and lungs and the nervous system, and that would suck. I'm just exhausted by this diagnosis-chasing!

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    Derrie,
    I say go for it, too!
    I've gone to a teaching hospital in Houston, but they were looking for the reason that my muscles are weird. They were thinking that it was spinocerebellar ataxia, but ruled it out. I had several days of testing - MRIs, muscle biopsies, etc. The docs there were great.

    I have to go to teaching hospitals for the experts that can do the botox shots into my vocal cords. Lucky for me - there was one right up the street in San Antonio. Now, we have to drive 100 miles to San Francisco for my shots four times a year.

    I recently saw an expert from UCSF to try to determine if the muscle problem is Spastic Paraplegia. That was ruled out too, but the docs there still want to keep checking to see if they can pinpoint the genetic cause for my neurological problems.

    I'm thinking that it all stems from Sjogren's, and I would really love to see Dr. Carteron in SF, who specializes in it, but she doesn't take my insurance, so I'm stuck. When I move back to SA, I have a great rheumy there, so I've got a list of things to ask her.

    Good luck with your search. If the teaching hospital takes your insurance and/or can place you in a study which is funded by grants, the cost to you won't be so bad. We always stay in a hotel in SF that gives us both a medical and a military discount. We enjoy a bit of tourist time while we're at it.
    Hugs,
    Marla

  9. The Following 2 Users Say Thank You to magistramarla For This Useful Post:

    Derrie (09-08-2012), tgal (09-08-2012)

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    now that you have explained your situation...
    in a way that i understand.


    go for it!!!!!!!!!!!!!!!!!!


    you have everything to gain from going to a place where they are looking for everything.
    teaching hospitals usually have lots of eyes.
    teaching hospitals usually have lots of people discussing unusual casses.
    teaching hospitals have students wanting to learn.

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    tgal (09-08-2012)

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    Ha, my rheumatologist would love y'all! He's been bugging me to do this for months. Last week, when I was on the phone with him and I hinted that I might -- might -- be up for making a trip to the big city, he jumped right to, "Great, I'll coordinate this with your internist and talk to so-and-so and get your records sent over, now you'll want to make sure you have copies in hand, too, and photos of all your rashes and lesions and your MRIs and your CTs and your biopsy reports and..."

    And I'm just sitting there on the phone with my mouth sort of a agape, thinking, "Wait, did I just agree to this? Because I thought I said 'maybe.'"

    But y'alls' enthusiasm and especially your description of your own experience, Marla, is helpful. I think I'm just scared: scared of bad news, but also scared of the disappointment if they don't figure anything out. But I suppose the flip side is that I could finally get effective treatment. Or at least have the comfort of knowing I exhausted my options.

    (Seriously, my rheumatologist should pay y'all. You're way more convincing than he was, even though he really, really wanted me to go.)

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