At A Complete Loss For Words After Years Of Unethical Treatment By Doctors

[mushroom]

Needless to say, I switched orthopedists.

Reminds me of the first time I was seen by an orthopedist in the hospital the morning after my head-on accident, when he said to me "I am Dr. "Incompetent," I have looked at your x-rays and frankly I am not impressed." Needless to say, I was not impressed with him either, but he convinced me that my right ankle was just sprained (foot jammed hard on the brake) and gave me a moonboot and told me to walk on it.

After five weeks of "treatment" and hobbling around I heard him dictating an office note as I was leaving his office which aroused suspicion, went to the hospital and got a copy of my x-ray report (something he had not bothered to do--"I am an orthopedist, I can read x-rays") and started reading about the various fractures in my foot. I went straight back to his office, got a copy of my records and immediately went to an orthopedist I trusted. During this five weeks he had taken numerous x-rays and was still unable to detect any fractures.

And I think I told you about the ortho who spat out at me, "I think that's a bunch of poppycock!" during another ortho consultation.

Please don't talk to me about orthopedists, although I am afraid I might need another one because my neck injury from that 20-years-ago accident is flaring up again - bone spurs. Grrr.

[Fiddle-Faddle]

Please don't talk to me about orthopedists, although I am afraid I might need another one because my neck injury from that 20-years-ago accident is flaring up again - bone spurs. Grrr.

You might look into something called "iontophoresis" for helping the body resorb the bone spur--I've had that done for a bone spur on my shoulder (the other, supposedly "good" shoulder) that otherwise might have needed surgery. Physical therapists administer iontophoresis.

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[spunky]

Ugh... time for me to stop reading this thread... it's making me angry.

I just hate doctors... I know, I know, I've heard RUMORS that there are actually some good ones, who repsect, listen, care, and have enough smarts to actually diagnosis and do the RIGHT thing... but I've just heard stories about that.

I have my physical battle scars, emotional scars, and finally stopped going to doctors entirely. They frighten me. I just don't trust them and I've never met a nice one or a competent one. I still watch now as other family and friends go through the turmoils of misdiagnoses, harmful medications, screwed up and often even unnecessary surgeries, and the lying and bullying doctors use to get patients to do things against their own better judgement. I don't like doctors.

I gotta stop reading and thinkin' about this now... it's so horrible what they've done to people.

I'm sorry to hear these things that have happened to people. I'm glad for the internet and that I'm my own doctor at this point... I make mistakes... but they aren't nearly as devastating as the mistakes doctors have done to me in the past, plus, I did find out about my gluten problem entirely on my own...so I must be a pretty good doctor!!!!

[Lisa16]

We have a "hard to diagnose" disease. Whenever the medical community hits the wall (i.e. finds a problem they cannot fix or explain) they blame the patient, treat the symptoms but not the cause and cover each others' hinnies. They are only humans and they are hampered, both by lack of knowledge (education and training) as well as by a screwed up system.

Here are a few of my personal favorites that have made my life hard. I bet everybody has had at least one of these things happen:

If you request your records, they never include results from referrals-- each of those request must be done individually. So if you had testing by a second party, say, the results will not be in the file and you must contact that second party. Nobody explains this to you as a patient.

If a drug gives you side effects that require emergency treatment or if you have complications from surgery and go in, they will protect the doctor who prescribed the medicine or performed the surgery. This usually takes the form of "it is an anxiety attack" or "you are creating the symptom." This is particualry amusing when the symptom is listed as an unusual (but documented) side effect (like chest pains for a high blood pressure drug) and they tell you it is all in your head (or scare you into getting more tests done for blood clots and the like). And even when they can see the physical evidence of the screw-up (like a giant oozing hematoma at the surgery site) they will still say "it is nothing"and send you on your way. I guess they are afraid you will sue them.

If they don't understand the underlying cause or even see that there might be one (as in IBS or high blood pressure) they will treat the symptom and not the cause.

If test results are equivocal or they can't interpret them, you may end up with no treatment and severe consequences. In my case there was positive blood work but a negative biopsy-- ergo no diagnosis, probably resulting in two lost organs and eight years of needless pain.

If you step outside of the system or go to the emergency/on-call doctor, they will refuse to overstep your primary care person. So even if you are very ill indeed, they will simply treat the symptom, but not change the medicine or make a diagnosis.

If you have an emergency on certains days or at certain times of day, you are forced into the ER because everybody is booked. And again they will not do much beyond treat the symptom (depending on what it is) after waiting 5-6 hours to be seen. And you know your emergency is not as bad as the heart attack or the perforated lung, yet you are forced to go there. Take a good novel and a pocketful of patience...

If you need to see a specialist or get a referral because your doctor is unable to treat you, there is an endless amount of paperwork to jump through and then you end up in a bigger system that is just as bad as the first one, probably worse.

If you fall outside of the bell curve in terms of physiology, test results or drug reactions, they do not know what to do and will inevitably fail you. I have had doctors ask "what do you want to do?" or say "I am out of ideas here" or even just plain old give up and classify you as "untreatable." Thanks.

There is a double edged rhetoric that makes this even funnier. The standard rhetoric might say "This number must never be above X." And they scare you and make you think that because your number is, in fact, over X you are doomed or going to have some hideous consequence. Yet when their treatment fails, they are content to let that number stay there because there is nothing they can do to bring it down. And all the time they have you terrified because your number falls outside of the range. And they continuously monkey with the range to sell drugs. Nevermind that the drugs can kill you faster than the higher number ever will. This is where you really begin to understand as a patient that there are other forces at work besides the hippocaratic oath.

Medicine is, afterall, a business. And there are cost-effective measures and hard sells and advertising and hieracrchies and power struggles and systematic problems and human foibles and lots of errors. It is also better in many ways than it ever has been. And doctors, bless their hearts, really do try to help you for the most part-- as Budhists say, "the right intention" is there.

We must remember that we are in the "difficult to diagnose" category, for whatever unfair reason. And we really have no choice but to cooperate if we want medical help. And I guess you really do get more flies with honey than with vinegar. And this goes for both sides. We are all in this together for good or for bad. But you also do have to protect yourself and say no to something that can kill you or really hurt you.

I guess they are doing their best and I know it is a very stressful job. And how can they do a good job when they are double booked, running behind and getting paged while they try to read your chart and you are simulataneously trying to explain something important? There are pressures brought to bear that patients can only guess at and the doctors are frustrated/ disgusted too.

Muslims say that if you suffer from stomach problems you will go directly to paradise when you die. I take comfort from this while wretching my guts out some days-- or at least it makes me smile to think of it. Maybe their paradise is a big banquet table full of the things we could not eat in this life? Things we can eat with post-mortum impunity! So if you happen to believe in an afterlife, my fellow celiacs, I will see you at that benquet table on the other side. Until then,

hang in there.

Lisa

[pele]

Someday all of these doctors will get sick or injured and guess what? They will have to go to the doctor!! May they find one of their own caliber.

[Fiddle-Faddle]

We have a "hard to diagnose" disease.

Lisa

Yeah, really hard to diagnose. I have "diagnosed" 4 friends/acquaintances in the last 6 months. 3 had bloodwork that proved celiac. 1 had a good dietary response. Actually, all of them had good dietary response. And I don't have an MD after my name!

[munkee41182]

Should have sent them a bill saying they paid the wrong co-pay amount. Stupid doctors......

[YoloGx]

You might look into something called "iontophoresis" for helping the body resorb the bone spur--I've had that done for a bone spur on my shoulder (the other, supposedly "good" shoulder) that otherwise might have needed surgery. Physical therapists administer iontophoresis.

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I have used E-zorb (advertised on the Internet) and have found it actually works esp. on the bone spurs. I had bone spurs in my neck that seem to have gone away!! No more pain!

It is calcium that is made from plants devised by Chinese scientists originally. They did 20 years of research on it since so many Chinese have difficulty absorbing calcium. My mother recalls information on it in an old Scientific American. Check it out. Its a little spendy but for me worth it. Otherwise I don't absorb calcium well at all (peeling fingernails and the works!). At this point I take the minimum dose or actually have too much calcium! bone spurs as I understand it are caused by one absorbing too little calcium. Certainly this problem must be endemic for people with celiac.

Ironically one of my doctor horror stories was from a chiropractor I saw for many years who didn't bother to tell me I had bone spurs in my neck even though apparently he could tell I had them. After I got x rays on my neck he told me he already knew. So I asked why didn't he tell me. He said why should he, it would have done me no good. I flipped--though I didn't yell. I then eventually was able to find a solution. How wrong he was!! I think he wanted me to have to go see him for neck pain forever... But the other deal here is that no doubt in all honesty he thought there was no real solution and he didn't want me to freak.

Bea

[mushroom]

I have used E-zorb (advertised on the Internet) and have found it actually works esp. on the bone spurs. I had bone spurs in my neck that seem to have gone away!! No more pain!

Bea

Fiddle-Faddle and Bea:

Thank you both for your suggestions for avoiding the dreaded ortho. I had never heard of either of these things and don't know if physios know about iontophoresis here. Also, since I don't "do" corticosteroids at all well, I think the E-Zorb sounds like the best thing for me to try. My blood calcium levels are good but a DEXA scan a couple of years ago did show that I was losing bone so have been taking calcium citrate and Vitamin D. But EZorb--if it works it would be wonderful.

I had the x-rays done because I was considering going to my chiro for my neck pain, but since it was different from anything I had had before I wanted to check if there was anything else going on first.

Neroli

[Fiddle-Faddle]

Actually, for my bone spurs, they did not use corticosteroids. They used acetic acid (vinegar!) and ultrasound. I smelled like a salad, but it worked!

[mushroom]

Actually, for my bone spurs, they did not use corticosteroids. They used acetic acid (vinegar!) and ultrasound. I smelled like a salad, but it worked!

I will check it out next month when I am over there. Mmm, a salad you don't have to digest

[Simona]

Has anyone else had such similar negative experiences with doctors?

Oh...heck YES!

I'm 36 and I've had symptoms since I was 5. I was only recently diagnosed. My family doctor sent me to a "wonderful specialist" who told me that he WOULDN'T diagnose me with anything because I was "too fat to have anything" and all of his clients "are severely malnurished and underweight".

I told him I was sorry to have ruined his day by throwing a wrench into his idealic patient status-quo and walked out.

I went back to see my doc. and he referred me to someone who actually understood that celiac patients come in all shapes and sizes and actually referred me to a study being done in the UK that shows a majority of celiac patients are overweight.

It angers me that it took 31 years to get a diagnosis. And even more angry that I had to put up with that nonsense.

[YoloGx]

Actually, for my bone spurs, they did not use corticosteroids. They used acetic acid (vinegar!) and ultrasound. I smelled like a salad, but it worked!

I am glad the vinegar worked for you. I wonder though if it depends on what is causing the bone spurs? So here is the question, are there different causes for bone spurs? Does anyone here know? I am going to look this up too just because...

I would think that if bone spurs are caused by lack of calcium absorption for someone the vinegar might not work at least in the long term since its likely others would form. I think its possible to test OK with a blood test but a bone density test might show something different.

For me the benefits of using a more absorpable calcium has been pretty obvious in my hair and nails as well as teeth not to speak of my neck (which is harder to see but easier to feel).

Its possible too that somehow the vinegar helps in other ways too? It has been used as a general remedy for a variety of ailments as I recall.

I also am thinking/speculating that its very possible that as one's intestinal villi heals one has less malabsorption of various minerals etc. and thus maybe eventually fewer bone spurs...

Course for me the vinegar wouldn't work since I am allergic to it...

Bea

[shawna67]

This is the same experience as my husband (see below my signature). He's a shell of

the man he once was (see his photo in my posts). Imagine about 40 pounds thinner

and loss of muscle tone. That's what misdiagnosis has done to him. On paper his

blood tests are subperb! (except when they did the celiac blood tests in 2004). Whoops!

They made a mistake for 27 years! He still gets subperb blood test results and feels

like poop.

The story about your husband's misdiagnosis for all those years just further infuriates me. I wish there was something we could do to hold incompetent doctors accountable, but, unfortunately, medical malpractice laws are practically written to protect these incompetent bozzos. Sorry if I sound bitter but its just so frustrating to hear these types of stories.