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!
Success is not final, failure is not fatal: it is the courage to continue that counts.
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!
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...
"There but for the grace of God, go I."
"... His mercy endureth for ever."
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.
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!
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.
If you're around , how did your experience go?
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.