Dear hs,
Thank you for looking over my question(s) over and over. It seems like when I re-read my questions, it is not even me as my scenario changes so frequently. The only part is I cannot find a physician that will keep me if they even take me because of all of the symptoms that I have. I guess they don't want to be a part of a possible lawsuit. I do not want to sue any physicians, but this one, my ex-gp, he went over the line.
I have been to Johns Hopkins, NIH, Georgetown University, University of Md, Cleveland Clinic, the Mayo Clinic in Rochester and many more tertiary hospitals. When you mention medical centers is this the type you are talking about? I have been diagnosed with many Endocrine medical problems then NIH stated that I do not have any endocrine problems. I do not know what to believe anymore. NIH was only using me for a study when I was referred there by a past endocrine physician to help me, not to be in a study. They even lied to me at NIH. The resident, (learning doctor) told me that he would find out what was wrong with me but it will take time, patients and preserverance. I had 4 consults, then I was handed a paper to sign, to be in a study, and his senior doctor booted me. I received a $75.00 check in the mail but I refused to cash it because of their devious way of using me. I had to get up at 4am to get there on time because security there is tighter than the White House. I had to push them to perform tests and I should had listened to my instincts, but I am very desperate.
I now am so weak from having a dilated & strictured Common bile duct for 7 years. It was known by my ex-gp in 2002 but he never told me about the radiologists recommendations for further testing which could had been rectified 7 years ago if he had told me. Now I have a dilated CBD, intra-hepatic dilation, a fatty liver, (and I do not drink alcohol), a cyst on my liver, adhesive bands through out my intestines which just recently have totally kept me from evacuating, skin manifestions - sores erupting from under my skin which I am guessing are toxins trying to escape my body, tumors/lumps of some type all through out my body and recently was diagnosed with Hemangiomas scattered through out my T-spine,I have many spinal problems-herniated and torn discs, spondyloidosis, spinal stenosis, scoliosis, sciatica, DDD, I have Osteopenia, Edema especially in my hands and my hands ache worse than the rest of my bones, I literally hurt from my bones to skin and from the bottom of my feet to my skull. I also have bouts of inflammation that I can feel happening. It involves Keratitis, (once had a bout of Iritis in both eyes so bad that I was hospitalized for 5 days-this is when all of these weird symptoms started, Keratitis, that happens when I have inflammation.
I was put on a trial dose of corticosteroids to see if it would help when I was at the Mayo Clinic. They did do a lot of testing there but when they found that my common bile duct was strictured, they halted all further testing. The Endocrine physician that put me on the trial of Cortef,corticosteroids, stated that if it was going to work, it should work within a day or two. I would feel better. I felt worse the next day. I had to fly home the next day, and when I awoke, my ribs felt as if they were all broken. I could barely sit in the wheelchair to get to the airport. The only reason that I left was because it cost a LOT to stay at the ajoining hospital and at the time my husband did make a lot of money, around 400,000.00 a year.(now he has lost his job due to having to stay home with me and our son who has Aspergers Syndrome whom I cannot take care of not to mention myself, we have lost our home, on DSS, begging charities to keep housed and fed). I have a lot of guilt over the fact that he lost his job, not the money part I could care less about money or monetary items. Anyhow, this Chief Endocrine physician could not understand my test results and they did a lot of tests. He said that he did not even know how I was alive with the endocrine results that he got back over the 2 month period that I was there. I wish that I could go back to Mayo as they were the only ones that had me up and being tested on a daily basis in many different areas.The only problem was after I came home for Christmas and went back 2 days later, I was treated much differently. When I consulted with specialists after I came back, they did not even examine me, IE; the Rheumatologist did not touch me, he was rude, stated that nothing was wrong with me when he never even touched me. Every other physician acted strange and so did my Endocrine physician. Then I was told I had to see a psychiatrist for somataform. I know that I do not have this disorder but they would not let me consult with any other physcians until I consulted with the psychiatrist.
It seems like any physician/specialist that i consult with does not care about my symptoms or what I have been diagnosed with so far. I am talking about doctors at the institutes that I named above. I don't know what I am saying wrong or doing wrong. Recently I consulted with an Endo doctor at Hopkins. I didn't bring the mounds of tests, procedures, etc. I just brought the Mayo Clinic information as it was the best informaton. He yelled at me for not bringing everything. I told him that when I do bring everything, the physician seems very frustrated, and when I do not bring everything they seem frustrated. He said,"Of course they are frustrated when you bring in so much information". He just asked me why I did not bring in all of the information which does not even touch the amount of tests that Mayo did. I get confused by what doctors want from me. I asked him if he wanted me to fax or email the rest of the informaton to him. He said Yes. When I spend the little energy I have doing this I usually never hear back from the physician. So I first emailed him asking him if I did gather all of the endo tests,etc and emailed them to him, would he be my Endo doctor. He never replied.
I don't know what I have been doing wrong because all of the physicians that i consult with seem very nice at the initial appt. Then they run me through redundant tests, and I cannot speak to them again. I am starting to wonder if they were using me to gain $$ from performing tests but were not interested in helping me with the findings. I had 2 PPO insurances that always paid for everything, and I mean everything without questions.
About the prescriptions, I did find a pain management physician to prescribe my pain medications. I remember my gp complaining for years that every month my prescription plan would send him a letter every month trying to get him to prescribe something different for me. He was successful in dumping me by stating that he doesn't prescribe opiodes anymore despite the fact that he supplies the whole county with opiodes and they are in the hands of the addicts not the persons in pain. I guess that he was prescribing too much and he had to get rid of me because I became a pain in his rear due to the insurance company. It gets deeper than this but that is the past.
As I said, I truly don't want to sue anyone I just want to get better, at least functional a bit. Do you have any suggestions for tertiary hospitals? I truly believe I have an autoimmune disease(s), but when I have seen Rheumatologists, they only test me for Lymes, Lupus, Sarcoidosis, and a couple of other diseases when I know there are at least 80 different autoimmune diseases. I think if I could find out what this is and get it under control, I would feel a lot better and be able to deal with the other medical problems much better also.
Thank you very much for answering my question with candor. This is what I need, honesty from a physician and I need to know what I am doing wrong that drives doctors away from me. I am starting to feel like I live on a different plane than everyone else or that I am dead and don't know it.
God Bless,
kendra
