Discussions By Condition: Medical Errors

Lupus

Posted In: Medical Errors 9 Replies
  • Posted By: Anonymous
  • December 26, 2007
  • 00:21 AM

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.

Reply Flag this Discussion

9 Replies:

  • A long, sad tale. Sorry to hear that it took so long to get a correct diagnosis. IME rheumatologists will only diagnose if the official "indicators" are there in the right form. This means, unfortunately, that the disease progresses until they can make the "official" diagnosis. If you are interested in getting in touch with a natural health pro in your area, you may want to visit www.drjacktips.com I have known Dr. Tips for over ten years, studied with him and now keep in touch by email and phone. In my opinion, he is an excellent natural health professional. His interests in patient care are results, and when I have difficult cases I email him for his insight and recommendations.I am posting this because I do think so highly of him. He may be able to significantly help your wife. Steroids will supress symptoms, however they do not really work on why the disease is there. If you do contact Dr. Tips, tell him ralph referred you. (I'm in OH) I have sent others in your area to him with great results.
    Anonymous 42789 Replies
    • December 30, 2007
    • 06:08 PM
    • 0
    Flag this Response
  • hi i was very sorry to hear about the problems your wife has been havingi dont know if you have read the story i have just posted it is called epilepsey misdiagnosis ive had lupus about 15 years i was put on prednosone when i was first diagnosed but if didnt suit me i dont know how your wife is feeling on it because everybody is different and react different to certain medications i have not been on prednosone for a longwhile i have had a few different drugs including one called azathioprinebut now for the last few years i have been taking a anti-malaria tabletcalled chloroquine phosphate and although i have some very bad times with the lupus i have some quite good i always seem alot worse in winter.i dont live in america i live in the uk and fortunately i have a very good specialist who is willing to listen to your concerns and about how you are feeling which is a good help alot of doctors seem to think everything is psychomatic when it isnt im sure if you dont get any success with the medication she is on now it might be worth asking the doctor to try the anti-malaria medication i have mentioned i hope this has been a help toyou and my thoughts are with your wife.millyrose
    MILLYROSE7 1 Replies
    • January 8, 2008
    • 06:54 PM
    • 0
    Flag this Response
  • Thanks so much for sharing your wife's story jhwrr, Lupus can be extremely frustrating. My aunt died of Lupus the year I was born... needless to say there have been many more advances since then, but the frustration remains. Coincidentally, I work on a Discovery Health Channel show and am looking for a frustrating Lupus story to work with in order to give more awareness to the illness. I wondered if you'd be interested in chatting? Thanks, and you can email me at barbette@mikemathisprods.com if you're interested.
    mysterybette 9 Replies
    • January 21, 2008
    • 09:31 PM
    • 0
    Flag this Response
  • I am so sorry you and your wife had to go before such a long parade of morons before getting diagnosed. It took me 8 years to get diagnosed with my Hashimoto's Encephalopathy, a rare complication of a bread and butter illness- autoimmune thyroiditis. Because my TSH and other thyroid hormone levels were always normal, no one ever bothered to check my thyroid antibodies, which were highly elevated. I subsequently found out that my thyroid gland was full of tiny nodules, seen on CT scan and ultrasound.Like your wife, I too was told I had a psychosomatic illness. I am slowly overcoming the sting of having been sent off to shrinks and therapists for my symptoms, and placed on antidepressants like they were tic-tacs, all the time my symptoms being discounted or told they were not there, since my labs were okay. My primary doctors never even acknowledged that they did anything wrong when they found out about the thyroiditis, which was discovered by my 8th neurologist. They had noticed swollen lymph nodes in my neck for years and just sat on them, sometimes saying I had "chronic fatigue syndrome"I am happy you and your wife did not give up, and did not listen to the doctor who suggested in the chart (and probably to your wife's face too) that her illness was all in her head.I wish you and your wife the best. Sometimes being undiagnosed for so long is as bad as the disease itself.Best Wishes.
    Anonymous 42789 Replies
    • January 21, 2008
    • 11:17 PM
    • 0
    Flag this Response
  • iI HATE THE FACT THAT MANY PEOPLE HAVE AND ARE GOING THRU THIS "ITS IN YOUR HEAD " OR THIS WEEK ITS FIBRO AND NEXT WEEK ITS CF. MY 1ST DIAGNOSIS WAS LUPUS AND REFERED TO RHEM IN DALLAS TX. WHO PUT ME THRU ALL TEST AND REDIAGNOSISED ME W/ FIBRO AND CF AND OSTOATHRITIS WHICH REQUIRED SURGERY ON MY SHOULDER AND COLLAR BONE 6MOS LATER HAD TO HAVE OTHER SIDE DONE LATER WRIST AND ELBOW ONLY MEDS DR.GAVE WAS RELAFEN FOR JOINT PAIN HE SEEMED UPSET BECAUSE I AM UNABLE TO TAKE STERIODS ( THEY ALTER MY MENTAL STATE AND I GET SUICIDAL) BUT HE FELT THAT I JUST DIDN'T WANT TO TAKE THEM DUE TO WEIGHT GAIN THIS WAS IN 2005-06. INBETWEEN MY TO SHOULDER SURGERYS I BEGAN TO HAVE SEZIURES AND MONTHS LATER AFTER MANY TRIPS TO ER AND NEURO DIAGNOSISED W/ EPILEPSY. FEW MONTHS LATER IT WAS MY STOMACH THEN I HAD COLITIS IBS AND PRE CANCER POLUPS REMOVED AND FOR SOME REASON DR. CAN'T UNDERSTAND MY ACID LEVEL IS EXTREMELY HIGH EVEN W/ MEDS. NOW ITS MY LUNGS STAYED IN THE HOSPITAL 5 DAYS AND THEY DIDN'T WANT TO LET ME OUT CAUSE MY WHITE COUNT WAS 2 HIGH AND MY ARTRIAL O2 WAS 60% BUT REASON. NOW ENT SAYS I HAVE SORJEN (CAN'T SPELL IT) WHAT IS THIS REALLY ANY IDEAS THE DRS DON'T KNOW AND YES I DO SEE A SHRINK AND I HAVE CHGED.DRS BUT HAVEN'T SEEN NEW ONE
    endoftherope 3 Replies
    • January 27, 2008
    • 03:40 AM
    • 0
    Flag this Response
  • :(Sorry you had go through that. Sometimes, it's ridiculous what we have to through to get a right diagnoses. But I wanted to say is my dr sent me to a psychiatrist and pychologist and that was the best thing for me. Because I've been through so much and ended up with one disease after another I just had a hard time handling everthing. This dr would say one thing and that dr would say another thing and just confused the heck out of me. And I think my dr. saw that so seeing them was a blessing in disquise.;)
    klschup 42 Replies
    • January 30, 2008
    • 10:43 PM
    • 0
    Flag this Response
  • Hey Jhwrr, I'm trying to get ahold of you to see if you and your wife would be interested in telling your story to Discovery Health Channel. Please email me as soon as you can at barbette@mikemathisprods.comThank you,Barbette
    mysterybette 9 Replies
    • February 6, 2008
    • 08:35 PM
    • 0
    Flag this Response
  • who was the Rheumatologist you found in Austin??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.
    Anonymous 42789 Replies
    • September 21, 2010
    • 06:42 PM
    • 0
    Flag this Response
  • Find doctors that will treat your symptoms and won't wait for blood work/tests to come back positive. There are doctors that will help patients with their symptoms WHILE looking for the problem. Some peoples bodies for whatever reason mask, just don't give clear answers, or the tests don't result in strong positives necessary for a comfortable diagnosis from most doctors. It appears all symptomatic, this is a problem for most doctors. This is when you should be able to get 'what type of doctor' you have. You shouldn't waste a ton of time on a doctor who isn't helping you. It isn't personal, or about him/her (the doctor) it's about you. When patients don't get the support they need from their doctors it is time to change doctors. Being chronically ill in itself is frustrating, but trying to fight to be heard or understood becomes depressing to the point of debilitating. You start to question if maybe it might be in your head? Meanwhile the symptoms get worse. Stay the course,There are some doctors that are very compassionate and get the whole quality of life meaning. I can never impress this enough to my friends, to never ever let a doctor tell you what is ok for you. Doctors work for you, not the other way around. Hope things get better for you,If you can answer a question, did your wife not have the butterfly rash? That is common in Lupus- 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.
    Anonymous 42789 Replies
    • October 4, 2010
    • 09:38 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.