Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
* * * * * 1 votes

We Need To Start A Thread On Stupid Stuff Doctors Say!


  • Please log in to reply
279 replies to this topic

#46 love2travel

love2travel

    Čeznem da se u Hrvatskoj!

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,823 posts

Posted 26 February 2012 - 12:08 PM

I don't think I'd want a gorgeous Dr.? Just one who is knowledgable, compassionate and a good listener. Too bad there isn't a site like the dating sites to find the right match? :rolleyes:

I so feel for you and your doctor shopping, not to mention your health problems. :(

In addition to my doctor being gorgeous, he is compassionate, spends a lot of time with me even though the waiting room is full and is a superb listener. He is willing to accept suggestions, too. Plus he is knowledgable. So I consider myself extremely fortunate, especially after reading all these horror stories!
  • 0
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

Celiac.com Sponsor:

#47 Marilyn R

Marilyn R

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,482 posts

Posted 26 February 2012 - 01:22 PM

Neurapathy just reminded me of another stupid office visit. I went to my follow up visit after an EMG and ENG (run the other way if a specialist orders that test).

The Neurologist told me I had neurapathy. I already knew that, but had been corrected by other doctors who said that was a diagnosis, so I couldn't call it that until it was diagnosed. Until diagnosed, it was "tingling sensations".

The Neuro told me she wanted me to have a nerve biopsy. At this point, I was vary wary and asked her to describe the procedure. You go to a surgery center and they take a slice of a nerve out of your ankle. I told her I wanted to think about it. When I asked her why she wanted the test, she said it would help diagnose me.

On the next follow up visit after peering at her computer for several minutes, she asked if I was ready to schedule the nerve biopsy. I declined. She asked me why and I told her I'd researched it and that test is no longer recommended and some people had to be on crutches for weeks, and had had permanent nerve damage from the biopsy. I told her my neuropathy had gone from an "8" to a "2" on a scale of 1-10 gluten-free.

She gave me a look, and told me that was a problem. "What's a problem?" I asked. She said "It's a problem that people get on the internet and then don't follow their doctor's orders."

I gave her a look back. "You mean making an informed consent?" I asked.

My OB/GYN is pretty cute. Maybe I should switch to all young, handsome male doctors. At least then if the visit is worthless I can get a little eye candy for my co-payment. :D
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#48 GottaSki

GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,841 posts

Posted 26 February 2012 - 09:48 PM

Too many to count - all time favorite was Cheif of Rhuematolgy at a major teaching hospital telling me he highly doubted I had anything autoimmune going on. Stopped my from talking to docs for almost two years during which time I became so sick I almost kicked it.....always, always trust your gut and utilize docs for the info they are able to understand and assist with.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#49 GlutenFreeAustinite

GlutenFreeAustinite

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 176 posts

Posted 04 March 2012 - 04:47 PM

I had shoulder surgery this past September, and at my follow-up appointment 1 week after surgery, I asked the doctor what exactly a "subacromial decompression with a capsular shift" meant. Now, my orthopedic surgeon, who has the bedside manner of a corpse, looks at me and says," Well, I put a rubber band in it. Tightened it up." Obviously meant as a joke, but he delivered it with SUCH a deadpan manner and since I had never heard him make a joke before...I just stared at him.

I also saw an allergist at Dell Children's Hospital over the summer. The doctor had recently graduated med school, and was VERY adamant that I did not have celiac because my symptoms were atypical. She also was convinced that my hands swelling up every time I touch wheat was not an allergy because I didn't get hives, just a burning sensation. Or when someone who has handled wheat touches me, I get a similar reaction. She refused to test me for a wheat allergy, or really any foods, because she said that if "someone scratched her with a bunch of food samples, she would test positive too!" My mother convinced her to test me for soy, and I tested positive (and indeed, I do have symptoms--I get a stomachache and my throat gets tight, not true anaphylaxis though), but she didn't really think I needed to avoid eating it, or to carry an EpiPen. Lastly, she ordered a blood test for celiac after I'd been gluten free for a year, and when I pointed out that the negative tests were because of that, she said she had to check with the resident gastroenterologist. At the next appointment, she told me, very reluctantly, that I was right.
  • 0

#50 Ryniev

Ryniev

    Community Member

  • Advanced Members
  • PipPipPip
  • 47 posts

Posted 04 March 2012 - 07:35 PM

My ex-doctor told me that she didn't want to test me for celiac disease because "I didn't have the right symptoms for celiac and even if I did have it, she couldn't give me any medicine for it and I shouldn't eat wheat anyway with my severe IBS with diahrea but she could give me an anti-depressant to take at night for the IBS and another one to during the day for my severe stress" (which she was causing at that appoinment). I had written down all my symptoms and she yelled at me for "throwing information" at her.

She moved to Kansas City and retired to have a baby. I sure hope she is a better mother than MD. Most horrible doctor EVER.
  • 0

#51 melikamaui

melikamaui

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 190 posts

Posted 05 March 2012 - 10:18 AM

When I took my youngest son to a pediatric gastro who specializes in celiac disease, I expected a level of care and concern that I REALLY did not get. I was referred to him by my regular doc who, after positive blood work and positive genetic tests, thought a visit to him could be helpful. I go in with my then 4 year old son and was lectured for over TWO HOURS (no joke) about how I "want my son to have celiac disease" and "how impossible the gluten-free diet is to follow. No one is ever, really truly gluten-free". He ran all the tests again because he "didn't trust the lab my regular doc used" and said that my little guy "probably didn't have celiac disease".

I went home from this appointment with a mix of emotions, doubting myself...did I really want him to have celiac disease? If so, why was I crying about it every night after everyone went to sleep? Is it possible that this is all in my head? Does he really not have celiac disease? I spent the next two weeks waiting for the new results and actually got my hopes up, thinking that maybe he really didn't have it. After all, this doc has 35 years of experience in this field (as he told me over and over and over and over) he certainly must know more than I do! :P

When the results came back he did everything short of apologizing. Saying that he "rarely sees true cases of celiac disease" and that my son "clearly has it". Of course he still wanted to do a biopsy. I, with the backing up of my regular doc, refused. My regular doc agreed with me that doing a trial of eating gluten before the biopsy could kill my son. Absolutely 1000% not worth it for us.

I love my regular doc. When I told her the story of what happened she was furious. :D Since that horrible appointment, my oldest son, myself and now my mom have all been diagnosed. Guess I wasn't making it up after all!
  • 0

#52 Marilyn R

Marilyn R

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,482 posts

Posted 05 March 2012 - 05:43 PM

Shocking! :o
A Dr. that doesn't order blood tests she doesn't know how to read...AND her own Daughter had it? I wonder what else slips through the cracks with this Dr.?

It sounds like the Dr. that ordered the test considered the variables and that's why they didn't contact you and tell you about it? I hope that was the case..and not just laziness?
How do these Dr.s stay in business? So many people just blindly follow whatever the Dr. says..and if Dr.s are so clueless that way of doing things is downright scary!


This is how bad it is! I stopped by medical records because I'm changing doctors (again) and requested all copies of my lab draws for the past two years. Included in the stack of papers was a copy of the form they sent to our local health dept. as required by State Law. So they notified the health dept. that I had Lyme disease, but didn't notify me in November when this test was drawn.

I've actually scheduled an appointment with an infectious disease specialist, but will be surprised if I have Lyme Disease. (Not that I'm always right.)

:P

I didn't pick up the prescription for antibiotics because I always end up with a yeast infection when I take antibiotics. Hope my autoimmune system doesn't go crazy in the waiting room when I'm sitting there with all those peeps with infectious diseases, lol.

At the end of the day, you have to laugh or cry. I prefer laughter.
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#53 Marilyn R

Marilyn R

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,482 posts

Posted 05 March 2012 - 06:17 PM

I found out I have Discoid Lupus from picking up biopsy results from my dermatologist. The biopsy was taken over a year ago. This is news to me, the medical assistant called after the biopsy and told me she had good news, the biopsy was good.

It's still "Buyer beware" Now it is "Patient beware." I urge everyone to pick up results from every test you agree to. Don't rely on someone calling you even if they tell you they'll call with abnormal results. I don't mean to bum anybody out, but you have to be your own pilot. There are some dirty dawgs out there with impressive credentials that will steer you down the wrong path, at leas in MHO. :)
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#54 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,381 posts

Posted 05 March 2012 - 06:56 PM

I found out I have Discoid Lupus from picking up biopsy results from my dermatologist. The biopsy was taken over a year ago. This is news to me, the medical assistant called after the biopsy and told me she had good news, the biopsy was good.



I am so sorry to hear this news, Marilyn. And as always, I am appalled at the lack of good care we have both received during our long ordeal of trying to be DXed and to get well.

If it matters, I was tested repeatedly for Lyme-- because of the many shared symptoms-- and the specialist told me flat out, he was sure I did not have it, but that the two diseases (lyme and celiac disease) mimic each other.

I hope your LYME testing will also be NEGATIVE.


hugs, IH
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#55 mushroom

mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts

Posted 05 March 2012 - 07:42 PM

Oh, Marilyn, I can't believe they did that to you!. Yes, I am a strong believer in getting copies of EVERYTHING! I don't trust anyone :o I say it over and over - get copies of ALL your test results. If not your own pilot, you need to at least be in the cockpit and make sure the pilot is awake :blink: I hope your treatment has not suffered too badly with this delayed diagnosis. Avoiding the sun is not too bad - I do it all the time :)
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#56 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,381 posts

Posted 06 March 2012 - 05:32 AM

I agree totally with Shroom's advice.

I learned about getting testing results the hard way. I trusted too much and did not learn about a huge error that was made by my former GI doctor until it was too late. In April 2009, he scoped me and recommended that we continue the course we were on (various GERD and IBS medicines) despite my rapid 90 lbs. weight loss and constant muscle/bone pain and burning GI tract. I was going downhill rapidly but no one found this significant?

In Jan. 2010, I tearfully begged the doctor's Nurse Practitioner to test me for celiac. She told me it could not be "sprue" because my panel (run by another doctor) was NEG and "he went down there last year" and there was "just inflammation". She wanted me to take anti-depressants for "fibromyalgia" (I told her about the horrible pain I was in) and to take methotrexate as suggested by the rheumatologist (he said I might have spondyloarthropy) but I do not!! That was the last time I saw her because she was so rude and dismissive. (BTW, I no longer need any of those drugs as all those symptoms are gone)

I had been seeing this doctor since my initial round of bowel problems back in 1998! Their answer to that back then was round after round of antibiotics---which I dutifully took---but no one ever suggested Probiotics (and I was so naive, ill-informed and trusting back then)

By 2010, testing revealed no detectable good gut bacteria! :o (and this is why IH is so pushy about PROBIOTICS on here)

When I started to collect lab test results, pathology reports, etc. to bring to my new GI doctor, I saw, to my horror --that the GI doc had never even biopsied me. :o So how could they have ruled out celiac??? (again, I was ignorant of what is involved in a celiac DX and trusted this "reputable and highly regarded GI doctor" <_<

I wrote to them and asked why they let me suffer with all those symptoms for 12 years and how they could have made such a mistake?
No reply.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#57 Bubba's Mom

Bubba's Mom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,457 posts

Posted 06 March 2012 - 06:46 AM

I found out I have Discoid Lupus from picking up biopsy results from my dermatologist. The biopsy was taken over a year ago. This is news to me, the medical assistant called after the biopsy and told me she had good news, the biopsy was good.

It's still "Buyer beware" Now it is "Patient beware." I urge everyone to pick up results from every test you agree to. Don't rely on someone calling you even if they tell you they'll call with abnormal results. I don't mean to bum anybody out, but you have to be your own pilot. There are some dirty dawgs out there with impressive credentials that will steer you down the wrong path, at leas in MHO. :)

They made a DX and never told you? :o That's inexcusable!

I wanted to change PCP so I picked up my medical records (which they charged me for). I was shocked at how reports of my visits were described. Quite a work of fiction!
I called the GI's office that did my scope and blood tests in Dec. I was told my blood work shows I don't have Celiac. What if I wasn't so well informed and went off and had a gluten binge?
I've learned one thing through all of this..always get copies of test results!
  • 0

#58 maximoo

maximoo

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 323 posts

Posted 06 March 2012 - 06:58 AM

Irish, did you send the letter certified? Your Quack can always claim he did not get it if it's not certified.

There was an episode of Golden Girls where Dorothy wasn't well & every dr. was dismissive. Finally she got a dx of chronic fatique syndrome & she ran into the last dr who she saw at a restaurant. He had told her she was depressed & to get her hair & nails done. Well she reamed him up one side & down the other him right there in the restaurant.! It was a victory (altho ficticious) for all the patients who were ever dismissed or not taken seriously. Sure it's an old tv show but that was a very important lesson (which is not ficticious at all) about quacky Drs & it was filmed in the early 90's. In real life in continues & probably always will.

So sorry for you & what everyone here has been thru with these morons.
  • 0

#59 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,381 posts

Posted 06 March 2012 - 07:14 AM

Irish, did you send the letter certified? Your Quack can always claim he did not get it if it's not certified.

There was an episode of Golden Girls where Dorothy wasn't well & every dr. was dismissive. Finally she got a dx of chronic fatique syndrome & she ran into the last dr who she saw at a restaurant. He had told her she was depressed & to get her hair & nails done. Well she reamed him up one side & down the other him right there in the restaurant.! It was a victory (altho ficticious) for all the patients who were ever dismissed or not taken seriously. Sure it's an old tv show but that was a very important lesson (which is not ficticious at all) about quacky Drs & it was filmed in the early 90's. In real life in continues & probably always will.

So sorry for you & what everyone here has been thru with these morons.



I sent the letter to her (the NP) and a copy to the doctor who owns the practice and to the MD/"holistic" doc I was also seeing at the time who also missed the DX and told me "volunteer work" would be good for me as it would get my mind off the constant pain and my hair loss, etc. I posted that doozy of a story earlier in the thread.

It's okay. They can ignore me. They know what they did.

Even if I were to try and prove negligence, they will only justify it all by saying I tested NEG on blood panels anyway, so they did not need to take further action. It's also a problem of the "set diagnostic Gold standard criteria "BS that is in place for Celiac. :rolleyes:

This is how so many of us fall through the damn cracks.

Being our own advocates is the only way we got answers.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#60 love2travel

love2travel

    Čeznem da se u Hrvatskoj!

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,823 posts

Posted 06 March 2012 - 07:50 AM

How is all this possible? As I read through the posts it sounds as though you have been living in a nightmare. Are the doctor duds from all over the world gathered together and shipped to the US?
  • 0
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: