My wife was diagnosed with Lupus just a few days before Christmas after 7 years of "wandering" and "wondering" what was going on.
In late 1999, her primary care physician, a soccer mom doctor in Topeka KS incorrectly diagnosed her "chest pain" as pleuresy. Then later in 2000, after "months" of suffering, he decided to refer her to a Pulmonologist.
After the Pulmonologist examined her, he stated that she did not have pleuresy, but rather a combination of Fibromyalgia and asthma. He treated her for the asthma, and told us to get rid of our house cats or she could possibly die from the asthma. He referred her to a Topeka Rheumatologist for the Fibromyalgia.
Immediately, the Rheumatologist began running a battery of tests on her for Lupus, MS and RA. All came back negative at that time.
My wife had also during that time had to have outpatient surgery in Shawnee Mission KS, because her utereus had adhered to her bladder. While having that surgery, her Lawrence KS OB-GYN doctor had found endometrial tissue that he also lasered.(She had had major surgery back in the 80's for endometriosis).
After arriving back home in Topeka, she began to have a high pulse rate and her heart was "fluttering". We went to the emergency room of a local hospital, and she was found to be low on Potassium, her heart rate was 122 beats per minute, so they kept her overnight on an IV.
From that night on, she began to have high blood pressure and he soccer-mom primary care doctor put her on blood pressure medecine.
After months of getting any answer to why her blood pressure would not return to normal, we decided to change primary care doctors, and got a doctor that the other doctors in town went to. He immediately had a bunch of tests ran, and then found a small nodule on her thyroid gland.
Meanwhile the Rheumatologist, kept testing for MS, Lupus and RA about every 3 months.
In December, 2002, I took a job transfer to Temple TX, and got copies of her medical records sent to a primary care doctor in Belton TX.
The doctor looked at the tests my wife had been getting in Kansas, and decided to "give her a rest from testing for awhile". After a few visits, the doctor told her she was under a lot of stress, and needed to get a pet, since she wasn't feeling up to working. The doctor also recommended that she get a professional counselor to help her work with her stress. My wife had been told the same thing 20 years ago, when they were not able to diagnose her problem with Endometriosis.
She decided that the doctor didn't believe her concerning her symptoms, so she changed primary care physicians.
The new primary care physician referred her to a local Rheumatologist, but he didn't do any testing on her, except an occasional cholestrol check.
After several visits with the Rheumatologist, she decided to find another Rheumatologist, and found on in nearby Killeen TX. He was considered on of the best and brightest in the area. He ran very few tests, and basically told her she'd just have to adjust to "living" with the symptoms of Fibromyalgia. He prescribed sleep aids for her insomnia, muscle relaxants for the muscle pains.
In 2006, my wife was bitten by a stray cat she had been feeding. Her primary care doctor put her on high doses of antibiotics for a week or 10 days, which made her ill, but afterward she felt great, the pain was gone and for the first time in over 5 years she felt "normal" again.
But then she had a "relapse" in her Fibromyalgia that was much worse pain than she had before. We went to the internet to try to find a "cause" and ran across some articles concerning Mycoplasma. I became convinced that the "severe relapse" was due to a Mycoplasma "fight back" response.
She talked to her Rheumatologist and he thought it wouldn't hurt to try a antibiotic for awhile, but it was useless.
Her condition with pain worsened, and when she talked to her primary carfe physician about the pain, she broke down and cried. He gave her a card for a psychiatrist and tried to get her to go for counseling.
I said, "It's time to get another doctor. He's been doing "nothing" for you for 4 years, so it's time to move on.
We made an appointment with another Family Practice Primary Care Physician, and when I went in with her and we discussed my wife's problems, she said it was way over her head, and she could not help us.
A couple of months ago, we made an appointment with a Rheumatologist in Austin TX. Before going, we paid the clinic we used, for a copy of her medical record. It was clear when reading her record, that her previous primary care physician was biased toward a psychosomatic position regarding her pain and symptoms.
The Rheumatologist in Austin ordered a sonogram of her gall bladder, which revealed "sludge"; small stones in her gall bladder, and refered her to a Gastrologist for treatment/removal of her gall bladder (source of some of her abdominal pain), he also ordered a complete blood work ( 8 vials) and then, last week called her to come in for her next appointment early to tell her that the tests for Lupus came back positive on 2 antibody tests. He gave her a prescription for prednesone, a steroid to suppress the antibodies. He did tell her that it was still in the "early stages" and not "full blown" yet.
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