Discussions By Condition: Medical Errors

Doctor Used-Car Salemen

Posted In: Medical Errors 7 Replies
  • Posted By: nobodyz
  • November 12, 2008
  • 05:24 AM

Hi Everyone!

I'm hoping I can be clear as I write this. I have been on the proverbial merry-go-round of misdiagnosis for about 11 years.

After recently, and finally, being diagnosed with Celiac Disease (I had to get a tip from a friend who's married to a doctor, then do the research online, then bring it in and put it under my doctor's nose) there are many things I was previously diagnosed with that I believe might quite possibly be either:
a) other symptoms of Celiac Sprue
b) the consequence of undiagnosed Celiac Disease since childhood.

By the way, I have read in several places that typical signs of Celiac Sprue in children is distended or bloated stomach combined with flattened gluteous maximus: i.e. butt cheeks. This is a quite fair description of me as a child.

Before I give this list, here's a brief bio: I'm a 48 y.o. Caucasian female with Scottish, Irish, English, German and Welsh ancestry. I'm also post-menopausal, having gone through menopause very early starting at 35 years old.

Here's the list of my "other" diagnoses I think are linked to the previously undiagnosed Celiac Disease (a.k.a. Sprue):

-Degenerative Disc Disease (condition)
-Weakness and fatigue

The thing that really riled me was when I went for a colonoscopy (after 10 years of increasingly out-of-control diarrhea) and the gastroenterologist who performed it said he saw "signs of long term laxative use". I laughed incredulously and asked why on earth I would take a laxative when I was in there trying to find a cure for diarrhea so bad I was living in a diaper? His response was to ask if I drank herbal tea! The answer: no. Herbal supplements? No. Then he told me I have diverticulosis in my colon but everything else was fine.

Here's what I think: the appearance of "long term laxative use" in the colon is most likely the end, as it were, of the starting point of flattened villi in the small intestine found in Celiac patients. When I was told I would be going to him for the endoscopy part of diagnosis of Celiac, I declined. What a fool! He had my answers, why didn't he come up with more questions about WHY he was seeing these odd signs, which OBVIOUSLY had something to do with my constant diarrhea and loss of bowel control? What, is this House M.D. revisited where every doctor assumes he's being lied to? If so, I wish he had at least accused me so I could not only defend myself but search for other reasons for what he saw. That's a bizarre thing to see under a microscope when the patient hasn't touched a laxative in over a decade! What happened to this physician's curiosity or just plain professional ethic to look for answers to this troubling puzzle piece? I was dismissed and sent back to my PCP.

In addition, over a period of 11 years, but most especially the last 3 years, I have gone from an upright-standing, walking-around person to someone in a power wheel chair (loss of upper body strength, swollen painful knees with spurs in them, ruptured disc in my neck and several bulging discs in my lower back). I would think that chronic malabsorption combined with early onset menopause (which has been over for about 7 years now) would be a key suspect.

These would include all the above bone problems (Osteoporosis, Degenerative Disc Disease, Spondylolisthesis, Spondylosis) as well as weakness and fatigue and possibly Diverticulosis. Why is it that I can see the connections but my "medically trained" M.D.'s and specialists can't?

==== ====

Here's another one for ya, this one was so ridiculous it actually made me laugh:
I show up at my primary care physician's (PCP's) office with a complaint about my neck and shoulder. A month later I have lost use of my shoulder, 3 months after that I've lost use of my arm down to my elbow, and 3 months after that I'm begging my doctor to DO SOMETHING as my entire arm is essentially glued to my body and useless and the pain is interminable at about a level 12 on a 1-10 scale. He doesn't know what's wrong. All he's done is give me Tylenol and Neurontin for pain and sent me to physical therapy. The physical therapist kept remarking on how I had these "adhesions" she would work out on every visit only to have to re-work them out on the next visit only 2 days later. Mind you, she sent her full reports into my PCP and he still didn't have a clue.

I go online (painful thing that was!) and over several months finally dug something up I thought would explain it: Adhesive Capsulitis, otherwise known as "Frozen Shoulder". I take the information in to my PCP and he says "OH! Wow. Maaaaybe....." and sends me to an Orthopedic Surgeon who does an in-office examination and informs me that I have Adhesive Capsulitis, otherwise known as Frozen Shoulder.


AND the worst part is because diagnosis was delayed so long, I had to suffer with it until it broke up of it's own accord, and even with that, I will never have full use of my shoulder again. This took 3 years in my case . I lost my car due to not driving it and it being towed away by the police as my residential parking space is within a city parking lot and the car "must be moved" every 3 days. Of course, I couldn't do that with a useless right arm. So I lost the car and the full use of my shoulder because my doctor is either too stupid or too lazy or too something else to bother figuring this out for me in a timely manner. And a very important fact in this case is that I ran a paid-for, online check on this particular PCP online and it was a glowing report. After I reported him to the clinic's Quality Assurance Committee (important! These can help!) he was investigated and left town 3 days after that investigation was concluded. Yes, picked up his family, walked away from a lucrative 12 year long practice and quietly left town.

Beginning over 25 years ago, it took doctors 8 years to diagnose a disorder I had that was curable in 10 years. Because of that "shortcoming" on the doctor's part, I missed the majority of my only child's growing up. Wrong diagnoses happen all the time in my life. Either my state (CA) is stuffed to the brim with particularly bad doctors, or this happens more often than usual everywhere, I'm not sure which.

Some years ago, I think it was around 1994-1995, about the time the hormones given to generations of women the moment they entered menopause were pulled from the shelf, I also went off those same hormones as well as the rest of all medication I was on (I did it by the book, titrating) I began to check up on every single medication prescription offerred me, especially on interactions BETWEEN the meds I am taking. Numerous times I have had to reject a new prescription because the interaction was drug-drug dangerous with something I had already been prescribed: often by the same doctor.

After all these things, I find it both insulting and unbelievably obtuse to hear physicians continually play the "blame the patient" game on almost every medical complaint that walks into their office.

One could logically place a lucrative bet that one of the following 4 "reasons" will be (initially or repeatedly) used by the doctor as The Cause of virtually any "symptom" you have (including devastating diseases such as cancer and diabetes):
1.) obesity or being overweight
2.) smoking tobacco
3.) diet
4.) lack of enough or the "right kind" of exercise.

If that were true, anyone who is "correct" weight for their height, doesn't smoke tobacco, has a good diet and exercises "correctly" should live illness free. Right? Wrong. I know a guy who has had 7 heart operations and he fits all the above as a "good patient". It's called genes, folks. Think about that a moment.

The truth is, every single doctor, no matter the specialty, insists you fill out ONE (1) form before they will even deign to see you: a Family History of Illnesses and Conditions. Why? Well, because doctors already know that family history (genes) is the reason for numerous illnesses. So my question is why the insistence that everything the patient comes up with must be a lifestyle problem?

In my personal opinion, I think we should start a "blame the lazy doctor" campaign and stop this other nonsense.

To say that one has to be pro-active and one's own advocate in today's mess of a health-system is a gross understatement in my life. I urge any and all who can, to research as much as possible, take written questions in to each doctor, carefully check every prescription, and keep prescription numbers to a minimum: no more than 5 is ideal, though not always possible with people who have more than that many diseases or conditions. However, to those people I would recommend looking for "dual action" type medications: ones that might help 2 things at once to reduce the number of chemicals being poured into an already taxed body.

Also, I recently had a rheumatologist ask me (yes, that was ASK me) if I thought I had Fibromyalgia.

I had to pause, take a breath, then answered "No, you're the doctor here, You make the diagnosis, I don't. You tell me!"

To which he replied "Well, Fibromyalgia is a catch-all diagnosis. I mean, who knows what Fibromyalgia is, anyway?"

If that doesn't convince you to stand up for yourself and treat doctors as skeptically as you would used-car salesmen, I don't know what will.

So, hello to the group here, and I can't believe I haven't settled in here sooner.

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7 Replies:

  • Hey,I have to say your post has made me laugh. The sad thing is it couldn't be more true. I'm still in the process of trying to find out what the ***l is wrong with me. I've also had to trawl the internet get the information so I could tell my Doctor what was wrong with me and what to Prescribe. Keep posting.:D
    Anonymous 42789 Replies
    • November 12, 2008
    • 09:05 PM
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  • If you think so little of doctors and their diagnoses, don't go to them. Sheesh.
    Anonymous 42789 Replies
    • November 13, 2008
    • 03:19 AM
    • 0
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  • It is amazing that these lazy doctors seem to exist all over the world. You're thinking, it's just here, it must be better abroad, but it's not. The biggest problem with doctors is that they have encountered a certain number of conditions and they think that there are no others. I agree, you must do your own research and don't give up! There is a reason and it's not "all in your head".
    Felsen 510 Replies
    • November 14, 2008
    • 10:15 PM
    • 0
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  • If you think so little of doctors and their diagnoses, don't go to them. Sheesh.and how do you suggest one get a prescription for proper treatment ?DR's are necessary. It's just sad so many of them don't spend the time with patients to get to the bottom of whats wrong.
    alexburton 48 Replies
    • November 19, 2008
    • 10:43 PM
    • 0
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  • I work in a medical school (in the caribbean) and although some of the students are excellent and will make great docs, a lot of them do the minimum work to pass and are only looking forward to a well paid job they can coast along in with afternoons free for golf. Their interest will be in thier own well being and not in their patients.
    Anonymous 42789 Replies
    • November 25, 2008
    • 07:28 PM
    • 0
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  • nobodyz, your situation sounds a lot like mine. I'll post more later.
    hypatiaa 3 Replies
    • December 7, 2008
    • 11:59 AM
    • 0
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  • Hemochromatosis (iron overload): http://en.wikipedia.org/wiki/Hemochromatosis http://www.ironoverload.org/facts.htmlInteresting, but celiac is related to your genes and HLA-DQ proteins predisposing you to the disease (you don't always get it even if you have the profile for it - your risk is higher is all), and hemochromatosis is sometimes related to having celiac, not the other way around.If you have celiac, you have an autoimmune disease, end of line. Genetically it is a kissing cousin to Type I diabetes, and people in your familial history with Type I diabetes or flat out having it can be an indicator of risk for this disease. It will throw your entire body out of whack if you develop this disease, I know only too well, and it is FAR worse if you are diagnosed as an adult rather than a child. I was diagnosed at age 35 with this crazy disease, and I think I had it my whole life. Suddenly all my childhood stomach and diarrhea problems are now explained. I am half Irish, and Irish people are highly disposed to developing this disease, as are Scandinavians, British, and Northern Spanish and Italians, and other odd groups such as Iranians and Saharawi Berbers of North Africa, there might be more and we don't know due to lack of research.I have celiac disease, I have been proven positive for the disease by biopsy (the gold standard) and anti-endomysial IgA antibody tests (this test is 100 percent positive for celiac disease). Getting these tests were extremely difficult for me. At various times I have been told it was all in my head, a hypochondriac, and that I had a systemic candida fungal infection. Recently I was also diagnosed as being hypothyroid, which explains the weight problems and tiredness all the time. I don't doubt my antibodies are doing something nasty to that too. Still can't get proper tests for Hashimoto's, which is also a complication of celiac disease.I am currently suffering from some similar problems as nobodyz, especially with peripheral neuropathy - weakness in my arms and hands, and also dry eye. I am also very disposed to lung, ear and eye infections, having had serious bouts of pneumonia already twice, and even a simple common cold becomes deeply threatening - taking months to recover from them. My last serious infection was of the ear and eyes, which now have left me with such a serious dry eye I cannot sleep a whole night without waking up to apply eyedrops. A year before my celiac diagnosis I had a deep vein thrombosis which became a lung embolism - due to hypercoagulation of my blood. This was the most dangerous misdiagnosis of them all - my GP told me that I had pneumonia and put me on antibiotics. When I worsened considerably after two weeks he only gave me more antibiotics, my boyfriend took me to the hospital where they accurately diagnosed my DVT and embolism and told me I was lucky to be alive. I shall never forget the look on the doctor's face who told me what was really wrong with me then. Like he saw a ghost. Said, well... you don't have asthma, you don't have pneumonia, and you're not leaving the hospital today. I was in for two weeks with heparin shots to the stomach and coumadin pills.I have been trying to get a biopsy done for Sjögren's syndrome (celiacs are also at risk for Sjögren's) and have failed so far. I suspect this is the other culprit to my lung, ear and eye problems. I just hope I dont die before they finally do some biopsies. I'd rather have them while I am alive than dead.
    hypatiaa 3 Replies
    • December 7, 2008
    • 06:15 PM
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