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Top Five Reasons To Get A New Doctor


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183 replies to this topic

#46 Centa

 
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Posted 30 September 2007 - 03:51 PM

My first post after registering is a rant about my frustration with my doc over in the false negatives thread, so I won't repeat it here.

My golly, these docs we're writing about all use the same lines! "I don't believe in..." "Here, take a pill, to sleep better..." My max out was that despite 1) reporting a ton of symptoms for 2 years and 2) then reporting massive improvement when I quit eating wheat, my doc kept doing a lupus test on me, because I do my own yard work & am in the sun, so have an age spot on the bridge of my nose. I'd say, I can't sleep, I'm ravenous, I can't think, I hurt and he would look at that 1/3" age spot on the bridge of my nose and order yet one more lupus test, which never came back positive, ever.

So: he refused to hear me, and chose to focus on a spot. :) I got one of those microdermabrasion kits at Walmart and microdermed the spot off. B)

Off topic, but the wackiest thing I've ever been told by a board certified physician is that a lump under my arm was an air bubble.
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#47 NativeLasVegas

 
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Posted 08 October 2007 - 09:06 PM

How about the ever famous answer of "It's a female thing". Followed in a close second to "It's all in yuor head. Here's a prescription for Prozac." Yeah I'm sure that Prozac is just gonna make me happy that I have lower right abdominal pain, weight loss, diarrhea, gas, bloating, more weight loss, and chronic anemia.

We should start a list of favorite quotes from relatives and doctors!


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#48 LoriC

 
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Posted 09 October 2007 - 04:02 PM

All i can say is WOW!!! i'm reading these posts and relating so much, i went in to my family dr. last summer with a rash (2006) i was told i picked something up from camping, went back in 3 weeks later as the rash didn't go away, i was told my husband must be giving me something from his work, got more predisone, was back in 3 weeks with the rash still...i was told then, it's something from camping again, got a cream that didn't really work. I went to see my ob/gyn, told twice by her she didn't no what it was, but treated me for a yeast infection..then i put up with the rash for another few months. I go back into my family dr. this July, still with rash, aching legs, feet, head fog real bad, dizzy, nauseated, was told i have vertigo and put on an antibiotic which didn't do a darn thing but make my D worse. I go back in 2 weeks later still with all the symptoms, was told, its a virus. SOOOOO i take it upon myself to see a dermatologist, was put on dapsone for 3 weeks, return visit was told its DH. was put on a gluten-free diet and more dapsone and my rash is almost gone and i feel soo much better.

OHHH and when i told my family dr. it was DH, he said hmmmmm i'm curious to see if thats what you really have, he said he doubted it, as i would be sicker than i was! I said ummmm i've been really sick for a long time, he said no you would be sicker than that..oh my, how much sicker can you get is what i thought. but this thread made me giggle, going to see a gastro dr. on Oct.15th, can't wait for that one :P
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#49 Jestgar

 
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Posted 10 October 2007 - 07:46 AM

I just had lunch with a group that included a pediatrician who told me that his step-mom has Celiac, then proceeded to tell me about all the great spelt bread I could get...
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"But then, in all honesty, if scientists don't play god, who will?"
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#50 weathertopmama

 
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Posted 08 January 2008 - 09:06 AM

This is the scariest thread I've ever read

My baby had rectal prolapse. Our family doctor wanted to just arrange a surgery, without even trying to find out why he was having that problem! I had looked online, and found that Toby had all the symptoms of cystic fibrosis. I insisted on an appt. with a ped. gastro. at our local children's hospital.

Toby was tested for cystic fibrosis, twice. He doesn't have it. The ped. gastro. consulted with the pulmonologist, and between them they decided it was asthma + celiac disease.

During that same time period, my 8 year old was suffering from horrible constipation and acid reflux. We took him to the family doctor, who wasn't in that day so we saw his partner. Thankfully the other doctor has celiac disease himself, and actually knows what he's doing! He sent us to the lab for testing, it showed a slight positive. We had all 4 boys tested, and they had nearly identical results!

We went gluten-free, Toby never had another rectal prolapse, Nate's constipation and reflux were cured (and he started growing again), Jonas's autistic behaviors and learning disabilities disappeared, he now 'only' has ADHD, and Henry's lifelong potbelly is gone.

I had friends on a parenting message board who told me to insist on seeing experts, and not quitting until I had real answers with lab results to back it up. They said parents have to fight for proper care. I'm glad I got that good advice.
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Amy, celiac mama of 4 little celiac boys, Mike's wife, homeschooler :)

#51 sissyjane

 
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Posted 12 January 2008 - 10:13 AM

(1) When you finally get up the nerve to tell your doc about your embarassing symptoms of gas, bloating, constipation and excruciating gut pain, she tells you "Oh, that's just IBS". Everybody your age gets IBS."

(2) When you ask how to treat IBS, she hands you a diet sheet which recommends you eat more fiber, but especially WHEAT bran.

(3) When you follow her 'IBS' diet sheet suggestions and your symptoms get WORSE, not better, she says, "You'll have to learn to live with it. There's nothing else we can do."

(4) Your doctor wants to test you for all the diseases for which you have no risk factors (like breast cancer, heart disease, etc.), but can't explain or resolve your excruciating gut pain symptoms.

(5) Your doctor tells you that you're perfectly healthy according to your physical exam and test results.



My doctor has said ALL of those exact things to me. I haven't been diagnosed yet, but have another appointment with him at the end of the month. The other times I went to him I had never heard of Celiac. Now I'm doing my homework, and making myself sick eating gluten! I'm hoping I can talk him into doing the blood panel.

I've found a Gastroenterologist that has been recommended, so will ask my internest for a referral as well.

Michelle
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#52 bigfootme

 
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Posted 20 January 2008 - 08:43 AM

For my complaints of dumping immediately after taking a bite of food, my primary care doctor did two things, gave me zelnorm, which is for constipation and told me that I was depressed, it was my nerves, and that I had IBS. He managed to get me to take paxil with no results, then zoloft which made it so much worse that I could not even eat one bite of food in the am and travel by car to work without having an accident. I had to wait all day long until I got home to eat, to where I could be near a toilet.

He kept trying different antidepressants, all with no results. I refused them after awhile and still he kept trying. Even though he never said it, looking back, I realize now that he thought I was some kind of a nut case. Our twenty year relationship ended when his office sent me a certified letter stating that it was no longer beneficial for him to be my doctor.

The only good thing that he did for me was to send me to a GI doctor who prescribed Cholestyramine which helped enough with the D that I could have enough time after eating to get to the bathroom, in most cases.

By that time I was so worn down and mentally confused due to fatigue and other symptoms that I didn't have the wherewithal to even keep track of doctor's appointments. The GI doctor insisted that I needed a test, which I have no clue to this day what the test was, and I kept dragging myself out of bed and going on the wrong day. I would go a few days in advance or a few days after the scheduled appt. I never got that test.

I then went through a sleeping spell that lasted for over 6 weeks, only rising to use the restroom and eating very little as everything made me sick.

Went to another doctor who told me I had EBV and low thyroid.

By this time, my extended family had drawn the conclusion that I was just lazy and were very unhappy with me because I could not drag myself out of bed to go visit them or do things with them. My brother washed his hands of me at that time.........and still won't speak to me because he wanted to have a big dinner for my birthday and I told him that I was too sick to come.

My new doctor listened to my entire laundry list of complaints, including the fact that my memory has deteriorated so badly that while on the way to his office I could not even remember where I was going at all for a few moments, and to his credit did not try to put me on antidepressants but started running blood tests. They came back as extremely low folate and low thyroid.

I have discussed the likelihood that I have Celiac disease with him but so far as I am aware, he has yet to order any blood tests for that nor has he referred me to a specialist in that field. He did however refer me to an allergist. The results where that out of 64 things tested for including, trees, grasses, molds and foods that I am allergic to all but 7. Beef, pork, chicken, fish, egg whites, garlic and saline are my safe foods.

When the test results came back on all of that he exclaimed with happiness, "See, it's not all in your head after all, you have a real problem". I had never indicated that it was all in my head. I had told the man that I have had chronic D for 12 years now and was suffering from extreme fatigue to where I could sleep around the clock and that my stomach was constantly bloated and felt as if it were on fire with infection at times, which I believed was altering my ability to absorb proper nutrients to the point that I was losing cognitive ability.

On my own I have gone gluten free, but it is particularly difficult when you are allergic to all grasses including rice. I have lived on cabbage soup, roast beef, scrambled eggs, green beans, pineapple and chicken for the last several months. The D is gone for the first time in 12 years.

This guy seems to want to help, but really knows so little, but is not really wanting to refer me to a specialist, as he seems to want to try to figure it out himself. If he will refer me to someone who can help I will keep him for my primary physician but if he won't, I am going to have to go doctor shopping yet again.
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#53 Worriedtodeath

 
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Posted 20 January 2008 - 12:09 PM

5) First Gi when you were 16 did the upper and lower gi x rays and prononced your daily vomiting and diaherra for the last 2 years as possible complication from your appendectomy at age 14 and that being female, you were high strung and until you learned to handle stress would have diaherra. and then proceeded to do nothing for either possible problem

4) Second gi at age 18 after 4 years of on and off weekly if not almost daily diaherra seconds the first gi's opinion and adds if you were male I would rerun the tests but since you are female that automatically increases your inability to handle stress and you need to learn to chill. Go camping! Nature's relaxing. (not when you are pooping behind every tree on the trail!!)

3)after a major issue that winds up dx you with fibromyalgae(SP?) they inform you the "muslce relaxers" they are prescribe are anti-deppressants and that will not only cure your muscle aches but make you sleep at night and finally clear up that ongoing stomach issue since it will automatically help control your stress by making you feel happy

2) DIrect quote from a real practicing md who still is practicing - "everybody has problems, I have a bad back and can't do some things, my nurse has bad knees (she was the biggest woman I have ever seen in person even now years later) and you well you just internalize stress in your gut. At least it's not your heart or you would probably be dead by now." No joke sherlock !!! I'm just slowly dying

1) and From the baby's ped gi who just recently after interviewing him and getting all the right answers about Celiac being under diagnosed, a patchy disease that biopsies easily miss, you can be neg now and positive in a year or two or even longer, and that the biopsy can't rule it out completely back pedals and informs us that the biospy shows that she has absolutely no problem with wheat but lactose instead. Put her on wheat and take out the diary, she'll be perfectly fine in 2 weeks!

Oh and my all time favorite "according to your labs and tests, you are perfectly fine and shouldn't be sick" Gee reckon my body didn't understand the test results.
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#54 cmom

 
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Posted 20 January 2008 - 02:04 PM

1. Doctor (1) orders barium enema at age 16. Shows nothing. No ideas as to how to feel better and not go to bathroom so much.
2. Doctor (2) orders barium enema, gallbladder ultrasound, sigmoidoscopy, and pap smear. No ideas as to what is wrong.
3. Doctor (3) says I am under stress and begins telling me about her own problems and how stress can make you sick. Sends me to psychiatrist.
4. Psychatrist, after several visits and I explain I can't afford him, sends me to his psychologist co-hort.
5. Psychologist tells me to "let go" and relieve the stress, giving me the example of herself. She stopped shaving her armpits b/c she didn't want to conform to what others ideas dictate.

I can add more reasons to find another doctor but the post would be too long. Even though I now have a celiac familiar GI, I still disagree with him on some issues. He told my son that sinus problems could not be a symptom of celiac. My son did not want me to go into the office with him, b/c he was 21 at the time, but I think he was a little intimidated and frustrated with me b/c I told him to tell the GI everything and some of it was brushed off.
Sorry, I may be getting off topic here.
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Robin from Indiana

#55 dazzling

 
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Posted 24 January 2008 - 07:38 PM

I had D for so many years, I really, truly thought it was just normal for me! Gas, bloating, D were all "normal". The anemia was just "normal" since I was a woman. Uh, in case you didn't read the notes or LISTEN to me, I had a hysterectomy 10 years ago. I sincerely doubt I am having heavy menstral bleeding.

If I had a dollar for every time I heard "your results are normal, it's just stress (or in your head)" I could live next door to Bill Gates.

Finally found a doctor who listens, understands nutrition and works to find the problems. I would never have thought of celiac disease because of being told for so many years that it was "normal" for me to have constant D. :angry: Just like it was "normal" for me to have constant fatigue, no energy, hair loss, extreme weight gain (after extreme loss), rabid mood swings (yes, I mean rabid, not rapid), severe anemia, headaches, blurred vision, brain fog, etc., etc. ("You're just over-reacting to the death of your father. Take some anti-depressants and you'll be fine." - No, I wasn't fine. I just wound up sleeping more and not being able to get to the b-room in time. :( )
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#56 Gwen B

 
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Posted 25 January 2008 - 09:25 AM

when you can't get an appointment to see your or any other doctor because you can just email your symptoms! <_<

When after doing this the Dr replies by email that it can't be celiac because the single tTg test taken 18 months ago (before symptoms got worse) was negative and there are no other tests! :o

When the Dr. says to come back if you continue to have swelling/breathing difficulty/hives but it's nothing to do with gluten because the test has to be posative. :huh:

when you email symptoms and the system cuts out after two paragraphs and you still can't get an appointment. :angry:

When the nurse in ER (contrary to the dr you see afterwards) tells you that despite what the dr says, if you feel better gluten free, then it probably is celiac! :lol:
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gluten free 11/1/07
CF, SF, 02/08
posative Enterolab results 3/11/08
HLA-DQB1, Allele 0303
HLA-DQB1, Allele 0609
Serologic equivalent: HLA-DQ 3,1 (subtype 9,6)

#57 home_based_mom

 
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Posted 25 January 2008 - 11:19 AM

Somewhere earlier in this thread it was said that this was the scariest thread ever. I have to agree. I also have to report that my Mom was once told that "it's all in your head." Turns out she had had a series of minor heart attacks! :o

I do hope the medical students keep track of this thread and get their classmates to care enough to listen to the patients and solve the problem instead of prescribing something - anything - so the patient goes away within the allotted 15 minute time slot.

It seems that no matter what chronic ailment you have "it's all in your head" gets used when it shouldn't. Besides my mom, I have heard others with chronic fatigue hear this all the time. A man at church has heard it many times and he has multiple problems.

I have heard that that in China you pay the doctor when you are well and don't pay as long as you stay sick. That way it is in the doctor's best interests to make you well and keep you that way. I don't know it that's true or not, but I like that idea! :)

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Sandi ~ learning to live in a world obsessed and infested with wheat.
"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .
"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)
The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

#58 ewalton

 
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Posted 25 January 2008 - 12:17 PM

The first doctor I saw about my celiac symptoms: "Maybe you just need a hamburger" (I was vegetarian at the time), "IgA Ttg is the only blood test for celiac", and after I told him that it *wasn't* and told him exactly which tests he should have ran, he handed me a computer printout and told me to "go do your homework and you can call if there's something too hard for you to figure out". Um, yeah. I'm a grad student in biophysics. I think I can figure it out.

And the classic: "you clearly have IBS, just take these fiber supplements and you'll be fine".

And lots of "have you considered that you might be depressed/under a lot of stress? Let me make an appointment with mental health...."

I'm slightly amazed that I still go to the doctor at all anymore :-p
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#59 ravenwoodglass

 
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Posted 25 January 2008 - 03:42 PM

I wonder if we should print out and send this to the AMA, Congress and the head of every major medical facility and school? So many stories of so much pain, so many dollars spent, lives stunted and cut short, I wonder if they would listen.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#60 home_based_mom

 
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Posted 25 January 2008 - 03:51 PM

I wonder if we should print out and send this to the AMA, Congress and the head of every major medical facility and school? So many stories of so much pain, so many dollars spent, lives stunted and cut short, I wonder if they would listen.



Ya know, it would be a bit pricey, but that ain't a bad idea. If even ONE paid attention it might be worth it.
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Sandi ~ learning to live in a world obsessed and infested with wheat.
"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .
"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)
The person we most dislike is still a soul for whom Christ died. (David Jeremiah)




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