Questioning the effectiveness of seeing doctors

[MeanOleRedHead66]

I have posted a few times here, and it seems like most everyone here suffers from just about the same problems I do.  I am interested in learning about what tests you have been subjected to, as I have been subjected to a myriad of them all with NO answers.  I was told today that there is nothing physically wrong with me.  Does that mean that I am making myself hurt?  I asked him that and he replied, "It just means that the source of your pain is not able to be found by scientific means."  OK, now what?  He said he "thinks" I just have IBS.  Just?
I don't understand why we have no rights as patients to be told what they are actually thinking.  I saw it in my chart as we were talking, my primary care physcians office refferal nurse indicated that I am "Hypochondrial in nature".  Hello. That REALLY ticked me off.  
I am seeing my chart from my primarys office on Friday.  And then that same day seeing my primary doctor too.  
My request to you, please, if you would take a few minutes and send me an email with your symptoms and diagnoses, (you don't have to add your real name if you don't want to)your age of onset and what YOU think caused(es) your pain.  I will print them and take them with me.  I want them to be able to tell me that all of you are "HYPOCHONDRIAL" too.  
I think its high time someone stands up and takes notice of the pain that people go through and are forced to live with because doctors think they know everything.

My email address is:  ***@****

My name is Denise and I am 35 years old with 5 children.  Please help me to maybe help us!

[adzdavis]

A related discussion, Undiagnosed pain was started.

[Addie]

You may have hit it on the nose, your Dr. Santa is not married. I am sorry to hear about your problem.  Is surgery warranted?  Will it get worse without it? Has there been successful surgery done for this anyplace in the U.S?  What does your Dr. Santa say?  You are close to Houston's Methodist Hopsital where they have some top notch docs. Maybe not a Dr. Santa but maybe one who knows about this problem.  Have you researched the internet on this?  Pls. keep us informed and B.Granny, you will be in my prayers as all those who are suffering.  God Bless Us All.

Lisa.

[Bionic Granny]

Hi everybody, I've been a little under the weather and severly depressed, after learning that my small intestines are curled up on my left side like a kitten on a rug. Yes , Lisa there is a Santa Dr. But he's just a surgeon and does not treat you for other things. Right now he is in Mexico doing free surgery at an Assemble of God hospital. You get all the time you need with him and he is very caring. You might even say he is your friend. But he's not married yet, so I think that has alot to do with it, or the fact that his sister died from cancer at the young age of 30. I live near Lafayette, La.--Cajun Country. I wish I could find a GP with his bed side manner, but so far no luck. At least now I know why I hurt, but he is hesitant (his words) to do surgery right now. I'm petrified, after reading how dangerous the surgery is, so I do understand his apprehension. I hope every one is doing better.Keep in touch.

[Addie]

I am jumping in again.  Growing up many moons ago, we all resepcted the doctor and the doctor respected the pateint. They were different then.  They took the time to help us. You could sense they cared even at a very young age.  There were no malpractice suits back then and if so....very very minimal.  

What happened????

I have been sick with a violent cough for 3 months now.  I also gave it to my hubby who has coughed now for 2 months.  We have very good health insurance but we know that a doc will spend 5 minutes with us and pat us on the back and send us out the door. Why bother.  Still looking for Dr. Santa. Is there one out there?

[aem]

I had my gallbladder removed 2 years ago and found that I still had a pain iin my right side sometimes after eating.  It was kind of like a cramp but more uncomfortable then anything else.  I now do the liver cleanse and have flushed over 2000 "gallstones" from my liver.  I did 10 flushes 2 weeks apart cost was less then $5.00 a cleanse and all the ingredients come from the grocery store.  I got rid of the pain in my side, headaches and skin rash.  I have loads more energy.  It took me over 3 months after I got the recipe to try it but I finally did and am really glad I did.  I am not sure if it will help ya'll but it did loads of stuff for me.  I also did not due the parasite cleanse before doing the liver cleanse and I had no problem flushing the stones.  I also tried drinking organic apple juice a few days prior to the cleanse.  I did not fast but just drank 2 glasses a day for 3 days prior (must be room temperature)  That also helps break down the "stones" in your liver.  That worked well too as when I did the flush the stones were already crumbling.  (and I really hate apple juice) I have noted a few web sites FYI.  I would also recommend a colon cleanse for some of you.  Might try it prior to the cleanse.  You don't have to believe in everything noted on these web-sites but the liver cleanse does work.  

http://curezone.com/cleanse/liver/huldas_recipe.asp
http://groups.yahoo.com/group/DrClark-testimonials/

Another really good site to read through.

http://www.afraidtoask.com/bowel/index.html
This is directly from this site:

"BLACK TARRY STOOL
Be worried. Iron supplements can cause black stool, but the other, more alarming cause is digested BLOOD.  Blood can turn the stool black, called "MELENA". The stool may also be tarry and sticky, and may smell especially bad.  This is SERIOUS. Call your doctor promptly; you may need to go to the emergency room if you feel weak. Be sure to tell the medical staff if you have conditions like heartburn, ulcers, cancer, any GI disease, as these may be the source of the bleeding."

[pikamom]

I sure can feel for all of you, I've had many bad experiences with doctors beginning when I was 26. When I was 25 I ruptured my dic at the L5 S1 level and had emergency surgery, my children were just babies. At the time of my surgery they noticed I had a large amount of blood in my urine and I was treated for a kidney infection. I had had so many kidney x-rays when I was pregnant for blood in the urine but they couldn't find the cause. Anyway, exactly a year after my back surgery, the severe bladder spasms, frequency and urgency started. My family doctor treated me for bladder infection even though I never had bacteria in the urine. Only large amount of blood. Then when I wasn't having relief of the excruciating symptoms he treated me for a yeast infection. I had no vaginal symptoms whatsoever! Then he sent me to a urologist. So began 6 months of doctors, urologists, gynecologists, neurologist...and you guessed it, a phychiatrist. I was told it was all in my head. I was peeing 60 times a day, not sleeping because of the horrible spasms, if I did fall asleep the pain would jerk me awake, I'd often wake up on the floor because I'd jumped out of bed to run to the bathroom in my sleep. I was at the point of suicide when someone finally did a cystoscopy...looked inside my bladder while I was under anethesia. The results were that my bladder was badly diseased, shriveled and hemoraging. I have interstitial cystitis, an incurable and debilitating disease. It's very similar to chrones. Well, I had a second back surgery that left me with a cane. I developed arthritis in my hands with lesions on the bone scan, and that was another run around. I went to my family doctor because my hand was hurting, he sent me to an orthopedic doctor who said I had tendonitis and sent me to hand therapy before even taking an xray! I went there for a month and no improvement so now he wants to do a bone scan. Still not a simple inexpensive xray! There is a lesion, so he takes blood tests, positive ANA and elevated sed rate. Off I go to the rhuematologist for lupus (interstitial cystitis is an autoimmine disease so I guess they thought I had lupus). I was tested extensively and no lupus. The rhuematologist sent her report to my house and I felt so angry when I read it. She mentioned I have levido reticularis (I saw someone else mentioned that) and I have so many things going wrong pointing to lupus but they aren't treating me for it. I have a chronic tachycardia, arrythmias with very abnormal EKG's and angina, all in the last year. I'm 37 years old and wonder what else is going to go wrong! I have abnormal test results with everything, my paps, EKG's, urine, ANA and sed rate...the last time I was in the hospital with my heart they told me my EKG's were so abnormal and my heart wasn't getting enough oxygen that I was going to have a heart attack so I consented to the emergency catheterization. I take so many pills its rediculous. And there aren't too many doctors I respect anymore. They just send me to all their friends so everyone gets a piece of the money.

[feelbetter]

I can't believe some of the stuff everyone has gone through!! I feel so bad for everyone. I have a friend who is a young girl (22) who had pain when she peed. She was sent for all kinds of tests and they could not figure it out. She was also treated for a bladder infection (altho the only evidence of this was pain when urinating.) After some more tests they thought she had bladder cancer. Well anyway, she ended up having severe crohns and had to be rushed to the hospital for surgery. She was really bad off and ended up getting an infection which then required more surgery and an iliostomy (not sure of the spelling there)While in the hospital she was not well cared for because it was so under-staffed. It was terrible but she is doing better now. Anyway, I hear so many of these stories. It is just so sad. We really have to fight for good health care which is terrible considering that you are not feeling well to begin with. SHAME on these doctors who just because they can't find what is wrong, tell people that it is all in their head!

[Baseball_Mom]

What part of the country do you live in?  Perhaps there is someone who visits this board that is close by and can suggest another doctor for you.  Even though you live in a small town, you may have to go to a larger one to be treated.  Sorry to hear you had a rotten Easter.  Anyway, stay focussed.  You are the best advocate you have for your health care.  Never give up!  Take care and best of luck to you.

[Bionic Granny]

I hope everyone had a blessed and wonderful Easter. My started on a sour note. Got the results from my upper GI series and it seems everything was normal, except my small intestines are all on my left side, instead of being spread across the abdomen. Makes me wonder if during one of my many surgeries, someone forgot to put them back, Also my surgeon, whom I trust with my life, suggested that I should seek a second opinion. He never did tell me the results of my ultrasound on my right side to check my gallbladder. I just don't know who to trust anymore--any suggestions. I live in a very small town-not a big selection of doctors to choose from. I'm scared and depressed, because after I eat, I am in pain and my heart beats very fast. The surgeon put me on Elavil to help me sleep and for the depression, but I really don't feel any better. Should I ask him if he is finished treating me or just find another doctor. I just have this sick feeling and am afraid to ask him if he is putting me off. Thanks to all of you for your support.

[MeanOleRedHead66]

Thanks so much for that link... I have signed up for the forum and already info is streaming in!  

I hope you have a great and pain free Easter!

{{{HUGZ}}}
Denise

PS That wish was for everyone!

[Baseball_Mom]

Hi - I read your posting about them finding some Pancreatic disease when they did your ERCP.  I would like to offer this URL to you.  I have many friends that have used this board that have gotten really good contacts.  I hope this information helps you.  Here's the URL:  http://www.pancreatitis.org.uk/  Best of luck to you and Happy Easter!

[feelbetter]

Hi. Is it really crucial to have surgery for endometriosis? After 3 years of scopes in my colon, my gastro doc could find nothing wrong. I was just there a couple on months ago for yet another exam and he said it was a mystery for now (I have rectal bleeding/blood in stool) He said if I had further problems, he would send me to a colon/rectal surgeon because they can cut and see more in your system (CUT????) But anyway, a friend found that endo can cause rectal bleeding and had me check out several websites and indeed it can. I went to my GYN and she put me on the pill (mostly to help with the awful bloating) and will see me again in May. She wants to avoid surgery if possible. I read that sometimes surgery does not help. What do you know about this? I guess this is my "bad" doctor story as well because WHY didn't my Gastro doc even consider endo especially after I charted my symptoms and the bleeding almost always happens a day or two before or during my period? He has never had a patient with endo. of the bowel? He was going to pass me and my problem off to a surgeon? I am sick of getting examed in that area. When I called my insurance Doc. who answers questions, he asked me if I was SURE it was blood and if I ever had it tested to see if it was blood! He then insinuated that I must want another colonoscopy and why since everything showed uo healthy! I was so shocked I didn't even tell him how offended I was. I hesitate to ever call HIM again for any advice. I just wanted to AVOID any other tests that I did not really need. Was I sure it was blood? It is like a heavy period from the wrong end for crying out loud!But anyway, I look forward to your experience with endo if you get a chance. I might also add that in my case, woman go through the change at an early age (I am 38) so wouldn't it go away then anyway? Thanks for listening.

[Addie]

Everyone should check their records and question the doctor for errors and get these errors corrected.  Check carefully for omissions and question every concern you have.  It is your body and no one should violate it.  We pay good money for professional help and we are entitled to good quality health care.

If we make a mistake in giving a doctor's office incorrect information, i.e. ss number, health insurance, etc. etc., the doctor's office will want this corrected immediatly.  

It is a 2 way street.

[MeanOleRedHead66]

Well, I went in and reviewed my record today... I can't begin to tell you how angry I am att he negligence of my primary caregiver and the people that work under him.  I have requested a full copy of my ENTIRE record, and after my appointment witht he nurse practioner tomorrow... to ask her why no one has ever caught any of the discrepancies and irregularities in my chart, I am changing doctors.  I have been with the same office for several years (8 to 10 at least) and in the small part of my chart I read today I counted at least twenty mistakes, and test results that were abnormal that I was NEVER told about.  Including the report from my ERCP done 8/27/01.  In that report it said there was obvious pancreas disease and that they backed out of the pancreatic ducts to prevent any further problems.
Hmmm... the test was done in August... no one from my docs office even read it until Oct. 10, 01' and I was never told about the pancreas disease part of the report.  They told me about the divism, but that was it.. and that didn't sound so serious.  
I am going to see an attorney Monday and going back to the gastro doc that did the ERCP for more information ASAP.  I want to know what all he found and what pancreas disease I have.  
I hope everyone will take an hour of so and make the appointment to go and READ your medical chart.  If there is anything you don't understand, ASK what it is.  And keep asking until you are satisfied.  
I feel a little better knowing that at least ONE doctor that I have seen in the last three years found SOMETHING.  I thought maybe I was a nut for a little while there!

Now the search for the pancreas disease starts as does the search for a new doctor.  
I'll be back to post soon as to what happens.  I wish we could start a group somehow to support each other a little more informally.
Take care everyone and feel better.
{{{HUGZ}}}
Denise

[reb]

Hi, I just found something of interest. It was an article in a UK magazine which suggested that "Candida" can cause health problems such as IBS. Candida is a yeast and just one of hundreds of tiny parasites and bacteria that live in the gut. A healthy digestive system behaves as a mini eco system where good bugs ensure efficient digestion and absorbtion of food while destroying any potentially harmful bugs- and keeping Candida under control. If the balance gets upset (can be caused by antibiotics, aspirin, bacterial or viral infections, poor diet, pollution, stress) candida can overgrow and evict the friendly bugs. Some of the symptoms are listed below.
Some major symptoms:
abdominal bloating, diarrhoea or constipation

Minor Symptoms
Persistent drowsiness / tired all the time
Headaches / migraines
Loss of balance
Rashes
Mucus in stools
Belching and /or flatulence
Bad breath
Tightness in chest
Heartburn and indigestion

Getting a diagnosis isn't easy, as candida is present in everybody's gut, so there is no clear cut method for testing for it in the laboratory.

The article goes on to say that even though the symptoms are "unpleasant" or even disabling, they are also likely to be dismissed by doctors as trivial complaints easily treated with over-the-counter medicines... sound familiar???

Some of the suggestions are the use of a good quality probiotic (not yogurt) to rebalance the gut and possibly excluding some types of food like wheat and dairy products and introducing more organic fruit, veg, and meat.

This really caught my eye because candiasis is hard (if not impossible) to diagnose and that the symptoms are likely to be dismissed by doctors.

Although my disruption of digestion was obviously caused by antibiotics, I thought it may help some of you out there. The probiotics I have taken have helped A LOT, I just am still extremely tired... which is much preferable to being in constant pain!

[evinrude]

This may help some of you. A few weeks ago I had unbelievably excrutiating pain in RUQ just below the ribs, bloating, swelling, chills etc. the same symptoms as many of you describe. First diagnosis was gall bladder, but there were no stones. Blood, urine, ultrasound, Xray  etc fine. Finally sent for CT scan which showed a perfect body. Diagnosis - you guessed it: IBS (for the umpteenth time).
In disgust (and pain) I made my own arangements to see a GI specialist who may be unique: he listened to me. Apparently I dont have IBS - he was very clear about that. He located the source of the pain as being the top of the kidney (not the gall bladder/liver/GI tract!) and in the absence of evidence of renal problems he thinks that adhesions (resulting from exploratory laparoscopy 8 yrs ago ?) are probably the source. The adhesions are possibly connecting the kidney to part of the colon - so the smallest constipation pulls on the kidneys and nerves.
Some doctors can't find their kidneys from their colons!
Once the precise location of adhesions has been found (and the nerves that it is pulling on) there is a way to move forwards: Firstly you know that at least one of them knows you are not mad. Secondly, if the pain becomes too unbearable, intelligent surgery is possible.
I am still in pain, but now it makes sense.
Good luck to you all.

[Lynn28]

Denise, did you have to read the report in the doctors office only? Now if I call my PCP and request a copy of my records, will it be the same as if I looked at them in the office???
I'm definitely doing this. Good for you!!! If you can, let me know.

THANKS!
Jenn

[MeanOleRedHead66]

I got this link in my emal this evening, it as a very good discription page for IBS.  Its worth the read if for nothing more than Ideas to help us all cope.

Goodnight everyone!

http://www.mayoclinic.com/findinformation/answers/answerdetail.cfm?objectID=2F5BC8D1-F09D-495F-B0D4A305788B7E81

AND

http://www.mayoclinic.com/findinformation/answers/invoke.cfm?objectid=F32C84B7-11F3-4E9D-80A5AD5354F27F4E

[MeanOleRedHead66]

I just want to say "Thank You" to everyone that has posted a reply for me, or sent me email.  I am taking these posts and my concerns to my primary care Physcian tomorrow.  I will not leave there until I am satisfied either.  And if I do leave dis-satisfied, it will be to go directly to my moms attorney.  I am so darn tired of these "Professionals" walking all over the rights of me and too many others that I have met here online and in my everyday life.

I thnk we are all getting the Proverbial "Brush Off." You know, the one where they think if they tell you enough times its all in your head, you will eventually believe them.  I refuse.  I am not going to take it anymore.

It really makes me wonder how they can sleep at night, knowing that everyday they make people miserable, simply by not taking them seriously.

I will post as soon as I can tomorrow about what I find and what I am going ot do about this.  I hope that maybe, just maybe... it will make a difference.  And if it doesn't... maybe I just need to speak a little more loudly and clearly... to someone who WILL listen.

Take care all and here is wishing everyone a pain free day!
{{{HUGZ}}}
Denise

[individual]

At the risk of showing my ignorance, what is IBS? My symptoms are not the same as the ones I've heard here. My main symptom is constant gas leaking out. It's like I'm farting all the time, but I can't help it. Most of the time I don't feel it, and I never hear it when it leaks out. I have avoided most social gatherings, and my job is very embarassing. I do have pain in the rectum two or three nights a month that wakes me up from a dead sleep. I am seeing a colorectal surgeon who has not made me look like a retard. I'm hopeful of finding the answers now after four years and multiple "doctors".

[jlojenjen]

I am so happy to have found a site with people experiencing similar issues:) It gets so difficult to continue on trying to figure out what is wrong with me when doctor after doctor "imply" I'm imagining things, and some even say it to my face!
I'm a 27hr old female. I started having severe, chronic pain in my upper left abdomen about a yr ago. Since then,I've seen GI dr's, gastroenterologists, surgeons, etc. Been through HIDA scan, upper/lower endoscopy, ERCP (they go into the Pancreas to check for blockage), CAT scans, MRIs, ultrasounds, gallbladder removal, and 2 other surgeries. They all show my pancreas is enlarged, and called it pangastritis. They took out my gallbladder, because I had slight decrease in contractability in the HIDA scan.  That did nothing but put me in a hospital overnight. Didn't help the pain.  
I have given up on pursuing the pain. The only thing that helps slightly is the Pancreatic enzymes they gave me when they said "You don't need these, you're pancreas is fine, but maybe it will help you because you'll think you're taking something you need".  WHATEVER!   Why, on earth, would any of us subject ourselves to all of these tests, operations, etc, if we weren't truly in pain?!?!?!?!   Why are the dr's in the field if they're there just to prove to us that we're not really sick?  

Someone mentioned endometreosis.  If they think you have signs of it, please do the laporoscopy surgery.  The earlier they catch it, the sooner they can slow it down.  Mine went undetected for 8 years, and that may be what damaged my pancreas, I have several growths on it.

If anyone runs into anything that helps unexplained abdominal pain, please post it!  Sounds like we're all suffering unnecessarily!  GOOD LUCK and hang in there. I learned from my endometreosis experience when I went through 15 OBGYN's all telling me I'm crazy, and then finding my current one who found it, and wants to help me sue previous dr's, that there are dr's out there who truly WANT to help.  If you have the insurance that allows it, keep trying new ones, you'll (we'll) find one who helps eventually!!!!

[scb234]

I also have similar symptoms - pain under rib cage on right side that gets worse throughout the day, and lots of gas and bloating that makes the pain seem worse. The doctor said I have IBS, but I just don't believe it. I've been given anti-spasmodics, which just made me tired (didn't do much for the pain). Had CT scan, upper GI, and hydascan. This has been going on for years! The last doctor I went to said, "well, you look healthy to me." after i described my symptoms to him. He then prescribed tylenol with codeine, which of course doesn't help with the symptoms.

I'm going to a new doctor next week. Hopefully, he can find something else!

[Addie]

I will not be bruised or battered anymore by any physician.

My opthamologist sent me to see a Rheumatologist because of the weird type symptoms I have encountered since 1999. I.e. gerd,hashimotos, livedo reticlarius (sp), and chronic conjunctivitis and breathing problems, i.e. some scarring at the top of the lungs.  The Opthamologist after doing office surgery to clean out the mess in my eyes, wanted to rule out a connective tissue disorder.

I saw the rheumatologist and she indicated that she did not think I had a systemic problem.  Little did I know what was about to come.

She sent the referring doctor a report and I believe a report came accidently  to me.  

I could not believe my eyes.  She indicated that I had been "sickly all my life" even though i indicated my symptoms began in 1999.  She mentioned that she had to read too much about my symptoms from the referring doctor and the paper work i had to fill out in her waiting rrom and it apparently was too much for her to handle and she would "try" the best she knows how!!! She wrote aboutthings that I never told her and I have no idea why she would do this.

I cried after reading this.  I made some calls to the University and was not given the time of day by one set of investigators.

I then turned it over to another team of investigators and they apologized to me for this doctor's actions.  They made her rewrite the report and send a corrected report to the ordering physician and to me.  The second report still had some errors and she claims that I told her this verbally.  Very wrong.

I am going back and she will correct these errors.  She indicated that I had a high glucose test.  I never did.  I am not diabetic and never had a glucose test higher than 89. I had an elevated Alkaline P. test that she ordered of which she told me it was not a concern that it was high.  Poor thing is getting her patients all mixed up.

We place our lives in the hands of these kind of doctors who seemingly can get away with murder.  I feel everyone needs to see their charts and take steps to correct doctor's errors. I also feel these doctors need to be made to apologize to the patient regardless if their egos are bruised and their halos tarnished.  Maybe some embarrasment will help another patient.  Wouldn't that be nice.

Signed:  Looking for a Doctor Santa.

[twingirl]

I feel so badly for all of you.  I have found out that some times you have to go through the same tests several times with different doctors before something shows up and don't tell your new doctor that you have seen another doctor about the problems that you are having.  Just maybe, the new doctor will look at your situation differently and not make an opinion from some other doctor's diagnosis.  Never let anyone tell you that "it is all in your head", and if they do, you don't have the right doctor.  Good luck to all of you!  Twingirl