my NIH experience

THIS IS MY EXPERIENCE -- I HAVE TRIED TO LEAVE THE DOCTORS' INVOLVED NAMES OUT SO AS NOT TO CAUSE ISSUES -- AGAIN, THIS IS WHAT HAPPENED TO ME.

Well, where to start--nurse took my vitals and some allergy info--head nurse comes in and says Dr. R is ready for her now! And whisks me and my chart to another room and retrieves my hubby and medical records from waiting area. In comes a very young doctor and two students. Dr. R came in and took all 3 three inch binders of my medical history and said that she and Dr. S were going to look them over in the conference room. The young Dr. starts to take my full medical history. By the time she had filled two pages front and back and had started on my family history (neither of which she finished), I think she just got sick of writing and she just stopped and said "Up on the table please". When she palpated my neck, it felt as if a butterfly had landed on me (hubs was even going to ask her if she was afraid to touch me LOL). She asked about some birthmarks and Ehlers-Danlos and that was that. That took exactly 1 hour.

My hubby goes to retrieve his glasses so he could read the paper b/c we figured we were going to be there a while. It takes me about 2 hours to go through my medical records, and I know where everything is.

Of course, while he was gone, Dr. R, Dr. S, Young Dr., 2 students and Dr. Schmoe (don't know who he was) all come traipsing back in.

Dr. S proceeds to tell me there is nothing wrong with me from an endocrine standpoint. All these diseases that I've been told I have I don't. I replied that I wasns't told I have anything, they were suggested as possibilities.

Well what do you want me to do--Fix me!! I would like to get on with living instead of dieing. There is something that all you doctors are not connecting together.

Well it's your kidneys -- that is your biggest problem. Your nephrologist, I believe, is wrong in his assumption that it is, ummm¦..(he was struggling for words here) so I say glomuerphilritis, interstitial fibrosis and arteriosclerosis?--¦Yes, that's it (gee, did you really look at my info?)...he is wrong, there are several AUTOIMMUNE DISEASES (that's your dept. dude) and GENETIC issues (that's the other doc's dept. ) that can cause kidney issues, but I'm not a kidney expert. (HUH??)

Further, the anemia you have, -- yes, Anemia of Chronic Disease -- Yes, what is the Chronic Disease? -- I don't know and neither do they (hoping maybe you all could tell me???), I've had it since childhood. Well it's probably your kidneys--No, I've only had KD since 4/08. Well it just hasn't shown up until now.

Ok, do you have any questions for me? I will put all this information in my report to you and your doctor. Nice to meet you.

By this time I felt I had been kicked in the gut. I just started packing up all my crap and told him NO. While my head is screaming every epitaph known. No labs, no physical, no testing, no nothing. 14 hour trip, about $400 in hotel, food, gas. The wear and tear on my body, my soul..no, no questions, get the hell away from me.

Dr. R stayed behind, I think she felt bad. I kind of got the feeling that she didn't necessarily agree with everything he said, but she has to tow the line b/c he's the greatest doctor in his field. She asked me if I thought it was a waste of time -- uh YES. Sorry, I don't want you to feel that we are just another bunch of doctors that don't know what's going on with you -- well you apparently are.

She had me sign some papers and let me know they would keep my case open in case something changes or I suddenly have a horn growing from my head.

My hubby then comes in b/c while he was gone he came back and the door was closed so he assumed that they were giving me a physical and looking at my body.

I was already packed and standing and walking out the door. I was so angry I couldn't even talk until I reached the car and then I broke down.

NIH, was a GIANT hospital and a GIANT waste of TIME with doctors that have GIANT EGOS!!!