I am by no means a certified doctor, but I am also not an idiot. I have an eye appointment on Monday. Both my dentist and my regular doctor have requested that I get tested for Sjorgren's, which of course, my eye doctor could easily run the eye tests for at this appointment.
A little background info: I am 19 years old and have had over 80 dental fillings. At the moment, I am in the process of having ALL of my teeth replaced with crowns because if I don't do it NOW, I'll need dentures by time I'm 23. My teeth are horribly rotten, from a permanent dry mouth and from lack of nutrients prior to celiac diagnosis. I have dry itchy eyes all the time and wake up with the most disgusting thick filmy goop covering my eyes each morning. I have also suffered from vaginal dryness for at least 2 years. My aunt was also diagnosed with Sjogren's last year. Considering these symptoms, both doctors think Sjogren's is the likely culprit and want the stupid tests done.
Like any good patient, I called my eye doctor ahead of time and let her know that these tests were being requested. I also asked of course whether or not I would be able to drive myself home after these tests and all those safety questions. I got the brush off from my eye doctor though. She basically told me that while its fine that the other doctors want her to run the tests, she doesn't know if she will bother because the disease is so rare. When I offered to get her in touch with the two other doctors, the response was "Oh I'm too busy for all of that." I hope she reserves time on monday to argue with me...cuz if she decides not to bother running the tests, I'll get the doctors on the phone and argue with the eye doctor all day until she backs down and does the tests.
I don't know if I would be as cheesed off if it was just a whim of mine to ask for the tests, but I'm livid that she brushed off the tests after 2 other medical professionals ordered me to get them. I have been using the same eye doctor since I was 2 years old, and that fact is probably the only reason I'm not hunting for a new eye doctor. My mom is livid at the way this is being handled too, and she has a calmer disposition than I do.
This is not the first doctor that has acted this way towards me...I had a pediatrician tell me after I was diagnosed celiac that the disease DIDN'T exist, just to cite another example. Don't get me wrong, I like my regular doctor, the dentist I could do without, but she does her work well. But after my numerous "ignorant doctor" experiences, I'm starting to wonder...are these people really working for our best interest at all?! Some of them have even made me wonder if their degrees are fake. I'm getting so frustrated with doctors....
Page 1 of 1
Frustrated
#1
Posted 30 October 2009 - 07:07 AM
Thyroid goiter, ADHD, illness induced depression, Celiac disease, DH, migraines, Nonverbal Learning Disability (Autism Spectrum Disorder), fertility problems (cause unknown)
gluten-free since October 2006, Nonverbal Learning Disability symptoms gone since May 2007
gluten-free since October 2006, Nonverbal Learning Disability symptoms gone since May 2007
#2
Posted 30 October 2009 - 10:13 AM
I know how you feel. I sometimes wonder what in the world are going to them for? I'm starting to think it is our perception of them though. We think they should be educated on any condition we throw at them, we think they should research any set of symptoms until the light bulb comes on and the dx reveals itself, we think they should be digging for the core problem of any symptom and not just giving us something to deal with the side affects of it. I don't think dr's look at treating us that way at all and I don't think they are taught to do so either.
It's a shame we have to shop around to dr after dr to find someone who cares.
When it was suggested my friend might have Sjorgrens, she was sent to an arthritis specialist not an eye dr.
It's a shame we have to shop around to dr after dr to find someone who cares.
When it was suggested my friend might have Sjorgrens, she was sent to an arthritis specialist not an eye dr.
#3
Posted 30 October 2009 - 10:42 AM
I also know how you feel...(I also feel a rant coming on...please forgive me).....I also have been treated very poorly by physicians...I also think that ang1e0251 is right however...We do expect our Dr's to treat us differently than they really do...not that our expectations are a bad thing....Unfortunately they are not taught that way in medical school...it seems like so many of our physicians are like walking robots under the influence of managed care...They have a line of patients in the waiting room, they are overbooked because many MD's get extra cash bonus for seeing more patients...they follow strict protocols which limit their ability to "get to the bottom of what is causing symptoms"...a.k.a. REAL diagnosing...
It is us, The Patients who have to scream loudly and be the "squeaky wheel" to get our medical needs met...we have to be advocates for ourselves...
I have to continually remind myself that I am the owner of my own body....I can make decisions that are right for me...
I am the one that employs my Doctor not the other way around....But it is hard...when as a patient you feel judged and
minimized or looked upon as some hypochondriac because they don't really know what is going on....
Don't get me wrong we need physicians...but somehow we must be confident in ourselves...which is not easy.....
as we sit in a cold examination room, with a humiliating patient gown, waiting for some harried Doc to come in and dismiss
your symptoms...give you a script and move on to the next patient not unlike a fast food restaurant line...
It is us, The Patients who have to scream loudly and be the "squeaky wheel" to get our medical needs met...we have to be advocates for ourselves...
I have to continually remind myself that I am the owner of my own body....I can make decisions that are right for me...
I am the one that employs my Doctor not the other way around....But it is hard...when as a patient you feel judged and
minimized or looked upon as some hypochondriac because they don't really know what is going on....
Don't get me wrong we need physicians...but somehow we must be confident in ourselves...which is not easy.....
as we sit in a cold examination room, with a humiliating patient gown, waiting for some harried Doc to come in and dismiss
your symptoms...give you a script and move on to the next patient not unlike a fast food restaurant line...
Constipation, Gas, Bloating, Abdominal Pain, Ataxia, Brain Fog, Joint Pain Headaches
Bloodwork Negative
Went gluten free 10/02/09
Immediate and Positive intestinal improvement with improvement in headache frequency
Enterolab results 11/23/09 (after one month gluten free)
Fecal Anti-tissue Transglutaminase IgA 10 units
Fecal Anti-gliadin IgA 9 units
Fecal Fat 1267 units
HLA-DQB1 Allele 1: 0201
HLA-DQB1 Allele 2: 0202
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)
Bloodwork Negative
Went gluten free 10/02/09
Immediate and Positive intestinal improvement with improvement in headache frequency
Enterolab results 11/23/09 (after one month gluten free)
Fecal Anti-tissue Transglutaminase IgA 10 units
Fecal Anti-gliadin IgA 9 units
Fecal Fat 1267 units
HLA-DQB1 Allele 1: 0201
HLA-DQB1 Allele 2: 0202
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)
#4
Posted 30 October 2009 - 11:09 AM
I think that part of the problem with medical school training is that doctors are not trained to think of their patients as thinking human beings! They are told to "go see the gall bladder in Room 203", or "check the lungs in Room 99" without a thought that there are living, thinking, feeling human beings attached to these organs who have their own take on what is going on with their lungs and what their gall bladder is doing to them, and have good information to provide if they would but listen. And no, I don't know what can be done about it except stand up for our rights, demand that we be listened to, and walk out the door if we are not. In other words, KTSWAG..
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
"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
#5
Posted 30 October 2009 - 01:22 PM
The test is very simple for heavens sake! It not like you doctors want her to do eye surgery or something they just want her to put a piece of paper in your eye and see if you are producing tears. If this doctor refuses to do so no matter how long you have been seeing her you need to find another doctor and report her for her negligence. Perhaps if you could drop by one of the doctors offices before the appointment and bring a written request on the doctors letterhead she might comply more readily.
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)
"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)
#6
Posted 30 October 2009 - 04:07 PM
I'm sorry for all of us in having to deal with doctors who do not understand our disease. And rather tahn admit that they dont know, they tell us it's in our head or there's nothing wrong. I really wish the AMA would make medical students read these threads as a part of their training. Grrr
Gluten free is not so bad! If you are new, hang it there, it gets easier!
#7
Posted 30 October 2009 - 04:20 PM
mushroom, on Oct 30 2009, 11:09 AM, said:
I think that part of the problem with medical school training is that doctors are not trained to think of their patients as thinking human beings! They are told to "go see the gall bladder in Room 203", or "check the lungs in Room 99" without a thought that there are living, thinking, feeling human beings attached to these organs who have their own take on what is going on with their lungs and what their gall bladder is doing to them, and have good information to provide if they would but listen. And no, I don't know what can be done about it except stand up for our rights, demand that we be listened to, and walk out the door if we are not. In other words, KTSWAG..
There was an episode of Scrubs where one of the topics was to "Get to know the patient by reading the history before walking in and doing whatever needed to be done"
Turk was to operate on a man who's foot was being removed. He jokingly asked why, and an assistant said, "Diabetes." It hit home to Turk because he told his wife he had it so he could snap his fingers and get cookies or a sandwich whenever he wanted because she feared his drop in blood sugar. Therefore turk was able to snack all day every day.
It goes to show that knowing who's body you are working on really helps. Sometimes I wonder why they won't take a look in the mirror and say, "If the shoe was on the other foot..."
-Self-diagnosed gluten/wheat intolerance 2007. Negative (basic) blood test for celiac disease March 2009.
-Diagnosed positive for Celiac 5/11/2010!!
-Vitamin D low (last year was deficient), Iodine low, Protein S low. Balance/dizziness not related to Celiac.
-Elimination diet 11-4-2009 and ended 02-28-2010. Tolerating dairy again. Highly intolerant to soy, sensitive to green peas and corn kernels.
"Oh CRAP! Are you SERIOUS??
-Diagnosed positive for Celiac 5/11/2010!!
-Vitamin D low (last year was deficient), Iodine low, Protein S low. Balance/dizziness not related to Celiac.
-Elimination diet 11-4-2009 and ended 02-28-2010. Tolerating dairy again. Highly intolerant to soy, sensitive to green peas and corn kernels.
"Oh CRAP! Are you SERIOUS??
#8
Posted 30 October 2009 - 04:26 PM
Wolicki, on Oct 31 2009, 01:07 PM, said:
I really wish the AMA would make medical students read these threads as a part of their training.
I really think it would be an eye-opener for most of them
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
"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
#9
Posted 31 October 2009 - 02:44 AM
As you can see in my signature - I've had all my teeth crowned due to emanel erosion. It gets very waring doesn't it? all the dental work along with celiac stuff.
I hope you will feel confident enough to insist on the proper tests. Would it help to bring someone with you? I go with my daughter (17) to her doctor and dental appts.
I hope you will feel confident enough to insist on the proper tests. Would it help to bring someone with you? I go with my daughter (17) to her doctor and dental appts.
~Michelle~
Mother to 3 wonderful children. :)
Diagnosed Celiac through bloodwork January 2009. Celiac confirmed through Biopsy August 2009.
Current symptoms include extreme lethargy, headaches, anaemia, severe joint pain, upset stomach, swollen lymph nodes, brain fog and shortness of breath. I have also had all my teeth crowned due to enamel erosion.
DS - Age 19 -diagnosed PDD-NOS. Not willing to be tested as yet.
DD - Age 17 - Negative IGA. Positive HLA DQ2 & HLA DQ5. Not gluten-free outside of home.
DS - Age 6 - diagnosed with ASD. Tested negative to blood tests. Still needs gene testing done. Born 11 weeks early due to severe IUGR.
All pregnancies have been pre-eclamptic.
Mother to 3 wonderful children. :)
Diagnosed Celiac through bloodwork January 2009. Celiac confirmed through Biopsy August 2009.
Current symptoms include extreme lethargy, headaches, anaemia, severe joint pain, upset stomach, swollen lymph nodes, brain fog and shortness of breath. I have also had all my teeth crowned due to enamel erosion.
DS - Age 19 -diagnosed PDD-NOS. Not willing to be tested as yet.
DD - Age 17 - Negative IGA. Positive HLA DQ2 & HLA DQ5. Not gluten-free outside of home.
DS - Age 6 - diagnosed with ASD. Tested negative to blood tests. Still needs gene testing done. Born 11 weeks early due to severe IUGR.
All pregnancies have been pre-eclamptic.
Share this topic:
Page 1 of 1

Help












