Emmi - Can I borrow your wand when you're done? :) Yes, the neurologist said it was all manifestations of Lupus CNS all along. He was very angry with my doctors for missing the diagnosis. I believe he even called the director and my doctor ended up leaving within the next two weeks. Little consulation to me, however. She pretty much left me for dead and I lost my kids for a time. Needless-to-say it angers me too that doctors do this. I brought my kids in to meet her the day she was leaving. I hate to see a doctor go, but hopefully she will realize that her bias affects other lives.
Originally they thought I may have depression and sent me to a neurologist after I made numerous requests. On the referral the doctor put supected psychosomatic illness. I went to John Hopkins and the doctor yelled at me and my mom that we were waisting his time and I was just depressed and crazy so therefore it was somatization. It confirmed my doctor's idea that I was just nuts. I didn't feel nuts or depressed.
I realize that no doctor can know everything. But if your client says they are not depressed or neurotic, goes to counseling at the doctors suggestion and the counselors tell the doctor the problem is NOT psychological and the patient is getting worse, then I think it is incumbent upon the doctor to follow-up and at least order tests. My doctor did not. Personally, I don't care if I was totally nuts, I was sick and in need of treatment.
So I went to DVR and the Divison of Vocational Rehab talked to the director and my doctor finally agreed to test me. I realize now all the "positive" results on these tests that she said weren't important, were. I had pernicious anemia, high ANA, low blood cell counts both red and white, hematuria, protienuria, EBV, hashimotos, etc. and my neuropsych test said I had organic brain damage. She refused to send me to any specialist or perform any more tests because I was just depressed. She was right this time, I did have depression finally and by this time I also lost my full-time job and insurance. I had now blood clots in my eyes and pericarditis so I went to a new hospital where they didn't have me listed as neurotic and hoped someone would treat me. Cooper Hospital actually asked me my medical history and treated my conditions. What a shock! I was told they thought I had Lupus. I explained my family members have Lupus but my regular doctor said it couldn't be Lupus. Cooper took pity on me and sent me to their neurologist and rheumatologist. I was diagnosed with Lupus CNS in November 2005.
Since then, I came back to see a new doctor in this area. I didn't realize they were ran by the local hospital and apparently had me down as neurotic still. I gave them the Cooper records, no one bothered to check them out. They sent me to their in-house counselor, who says I am one of the most stable people he knows despite what I had been through. I became sick again with rheumatism. Doctor briefly looked at the records and said he didn't know about the Lupus but I definitely had a rheumatic disease. Been sick several times thereafter. Now that it has hit the kidneys and heart again, they are now saying it is definitely Lupus and it is progressing that was last month. 10 Years Later.
I ask you, What Is Wrong With This Picture? Anyone, anyone? Maybe I am nuts to expect more than this. I'm sorry which planet did I get off on? What Country? Just kidding, but still I think that is nuts! Guess I made my point, wish an actual doctor would read this. For that matter I wish a doctor would read anything we all discuss. Now about that wand... Love y'all - Kristin
Dx: Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx: Atenolol, Aricept, Flexeril, Motrin Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.