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View Full Version : Teaching Hospitals - Your Experiences



Derrie
09-06-2012, 07:31 AM
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!

Derrie
09-07-2012, 06:30 PM
No one has been to a teaching hospital?

steve.b
09-07-2012, 10:50 PM
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.

tgal
09-07-2012, 11:57 PM
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

Derrie
09-08-2012, 07:08 AM
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.

tgal
09-08-2012, 07:36 AM
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

Derrie
09-08-2012, 08:01 AM
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!

magistramarla
09-08-2012, 01:19 PM
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

steve.b
09-08-2012, 09:07 PM
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.

Derrie
09-08-2012, 09:25 PM
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.)

steve.b
09-08-2012, 09:40 PM
........... You're way more convincing than he was.....

we speak from the heart...
because we have nothing to loose.
we are here because we care about you.... and everyone else on here.
by helping you.... we help ourselves.

this site is a win / win place.
i love comming here for my piece of sane reality.

tgal
09-08-2012, 11:23 PM
The one thing this disease has taught me is that my options are not exhausted unless I have my answers! I used to be scared of the doctors, believed everything they said and thought I was crazy. When I figured out that many of them simply didn't know what they were doing, or didn't care enough to find out what was wrong with me, I learned that I was in charge not them. You don't give me answers or you treat me like crap I will fire you and find someone that will! Never forget that the doctors work FOR YOU and you can fire them just like you hired them!

Derrie
09-10-2012, 08:35 PM
I'm going to do it. My internist and rheumatologist teamed up and made the referral today. No idea what happens next. I suppose someone will call me? After they decide whether or not to take me.

I'm a little excited about the idea of maybe figuring out a diagnosis, but also trying not to get my hopes up in case the teaching hospital won't take my case. I'm figuring with two doctors pushing for me, that should weigh in favor.

And I'm nervous that if they do take me, I'm going to go through a gazillion tests again, and leave with a big fat "Who knows?" again. But at least I'll be able to say I really did try everything!

jmail
09-11-2012, 03:59 PM
The teaching hospitals have more opportunity to encounter the "weird" that is in the world... and if they can at least diagnose you, then your local docs will be able to properly treat you. My experience was an education for me, though fruitless at the time ("I don't know what you have, but it's not Rheumatoid" 1995). Not to deter you from it, because like the others, I say "go for it!", with an added "ASAP!" Because of my continuing "reactions", my wife wants me go to the Cleveland Clinic for its resources, which is another great thing about the teaching hospitals: The close concentration of diagnostics and facilities of the "campus". I spent eight hours at the one in 1995, had like 12 vials of blood drawn (nuthin' like a good blood-letting), had all sorts and kinds of pictures taken, was poked and prodded by like 4 different professionals, some with students, some not, etc., and they all had my medical records to look at and read (my doc had faxed them there)... The "newbies" are curious, the instructors are learned ("learn-ed"??), so with all that, it might work, and the possibility of a diagnois makes it worth it...

Jend719
06-05-2013, 02:42 PM
Hi I'm new here. I live in a small town in upstate ny about an hour from NYC. The doctors here are idiots unless you have the standard upper respiratory infection or asthma. I went to the head of rheumatology department at a big teaching hosp in NYC. He was the first person to take me seriously. He first diagnosed me with fibromyalgia. He has now also diagnosed me with undifferentiated diffuse connective tissue disease. He has been so thorough referring me to different doctors there for evaluations of other symptoms, bone scans, bloodwork etc. I have a lot of faith in him. He has published many many articles in the field of rheumatology. I think the bigger hospitals have more funding for more detailed tests and research. Just my humble opinion. It's worth a try.

Jaynie
06-06-2013, 09:26 AM
Hi!

I still attend a teaching hospital tho I have attended locally for a few years in between. Initially it was great...somewhere that did lots of tests, bounced ideas off specialists and was very honest with me. That quickly turned to vague answers such as "you don't want us to diagnose you with lupus, that's a nasty disease, you're only 19, you don't want us to condemn you to that?" I was clinically non specific and that frustrated them, then when I felt no better on steroids and reacted very badly to 'Dapsone', they just left me to it. They did label me with UCTD, but 23 years ago no-one recognised that as a diagnosis. I went elsewhere for a few years and my symptoms improve whilst I'm pregnant which I was often lol. Then the rules changed and I couldn't go back. My rheumy dept sucked locally, the drs were dismissive and I gave up going, assuming I was ok, maybe I had ME etc...
I'm back there now and things have changed so much since then. I think Plaquenil is my saviour at this point. I still feel ill, but I think I would be so much worse without it.

In conclusion (!) teaching hospitals are worth the effort...but wherever you go you need to keep fighting for the right care and need to be informed and have some idea what you have! House (Dr House....from the series) is right. SOmetimes it IS lupus!

Ok, I think I waffled....but my heart is in the right place! Hope you get on ok!

Jx

tomcatsgirl
06-06-2013, 02:09 PM
On another note my experience with a teaching hospital was horrid. It's a long story 20 years long. I spent 20 years at a teaching hospital. Nope I'm not afraid to say it anymore. I went to the University of Washington. Sorry if you didn't care to know the name but its out there now. The list is long I was shuffled from one specialty clinic to the next with no one connecting the dots. I've been tested for everything it seems. 6 miscarriages, loss of my son at 4 days old thousands upon thousands (yes 10's of thousands IVF aint cheap )spent at their infertility clinic. Nephritis from the time I was 13 that's what caused the pre eclampsia hmm cant figure out why you won't stay pregnant. Un explained is what I was labeled. Un controllable menstral cycles led to a hysterectomy at 37 hmm don't know why it must be that one tiny fibroid. I could keep going but you get the idea.

I have aps a clotting disorder common in lupus. Found out about 2 years ago. A year after my hysterectomy. My pre eclampsia was lupus flaring. My nephritis is lupus nephritis.

I brought my library of medical records sent before I switched providers. My first appt I brought a few key copies with me and left my first appt with 90% I'm pretty sure it sle. After more testing it was confirmed and suspected that I've had it since the age of 13.

Obviously I'm not the only one in which lupus has impacted there lives. I'm just a bit angry that had they caught the dx 20/15 years ago before my heartbreaking struggles to have a family and the death of my son my life would be so different.
I know that lupus can be hard to dx but it was really slapping them in the face and they never got it.

Now I'm not saying for you not to go. A second opinion and a urging from your current dr I would go. My experience is just that my experience. Teaching hospitals have done great things and saved many lives. My first born is one of them and I am grateful to them for that.

I'm sorry if this post comes of gruff but I'm newly dx'd and am still pretty angry. I just wanted to give you my story. I don't want to scare you into not going as I think you should. I just have to put my anger some where for so many years it was on me. I was a big failure in my eyes because I couldn't give my husband a child. Lupus failed me I didn't fail me. Feels good to finally know it.

Nonna
06-07-2013, 05:40 AM
Derrie,
If you're around , how did your experience go?

supersleuth
06-07-2013, 01:49 PM
The "pros" are that a teaching hospital is always on the "learning curve" with cutting edge technology and fresh young opinions coupled with old tried and true opinions. Teaching hospitals normally have their own labs, xrays, and other physicians in other departments that your doc can refer questions to. The downside is that the doctors there seem to have a lot more patients, and you might get treated like a guinea pig.