Seeking stories of misdiagnosis

If everyone diagnosed with diabetes in the world could send/give some kind of Diabetes Diagnosis Fact Sheet to all their local doctors, that would be great! Not really possible, but…

If we just get the people on TuDiabetes, who are from all over the world, to help, it could have some interesting results.

That’s one way to make this misdiagnosis issue go viral!

If only 5 more doctors change their assumptions, great. If 50 more change or 500 more… imagine!

Funny…he is my patient…or was I should say. He knew exactly my correct diagnosis because I made him give me a referral to an endo when I was sure he was treating me incorrectly. We have spoken since and he never offered an apology or anything. All he would say is.“you still need to go very low-carb and exercise twice a day” even though at the time I was emaciated and so ill from DKA. His arrogance would not allow him to see the bigger picture and learn from his mistake. I make mistakes all the time and I hope I learn from them. I am not afraid to tell my patients I don’t know the answer to something. They actually appreciate it.
It is not called a medical or dental PRACTICE for nothing!!!

I think the Diabetes Association should represent us by sending the word out to the doctors. Maybe we should start there with some kind of formal letter or something. Just a thought!

Please keep us posted with the progress of this task. I would love to deliver something like this to the Diabetes Center that I attend. They are the ones who properly diagnosed me, but perhaps if they saw something like this they could take it a step further to bring awareness to it.

Here’s my story: (sorry for the length…but writing it was a long time coming for me)
http://www.tudiabetes.org/profiles/blogs/79and-thats-not-a-bs-my

All of you and your stories have given me much food for thought (not carby ones though LOL). I am going to figure out something and present it here soon for your opinions!

Susie

Can’t wait!!! Should be great Susie!! Carby thoughts…LOL…too funny!!!

That is very important to be diagnosed in time.

Tht is right.

That is good.

The CDA and ADA first because they set the guidelines that the endos and family physicians follow. Keep the stories coming!

"I truly hate most doctors and rarely bother going these days unless it’s for a script or if I’m half dead from something."
I feel the same way. Ditto, dealing with insurance which is a big part of managing a chronic disease.

Well, I don’t “hate” doctors, but I do have what I would term “trust issues.” Today, after two years of requests, I finally had my GAD65 test. When filling out my paperwork, I was informed that Labcorp did not do MRIs at this location. They had looked up the CPT code and found the first one, happily marking me down for an MRI brain scan with gadolinium for contrast. I was able to correct them, and then I made the nice phlebotomist point out to me the full listed test on her paperwork and show me that she was using a separate blood tube for the GAD65 sample. I have “trust issues.” I also haved mixed feelings about knowing the result.

inform your previous doctor (a teaching moment LOL)!

You have a very mature response to your doc’s mistake. I like that your doc is forever educated and likely to diagnose future patients correctly.

Oh no! Does this mean that you have to wait longer for the test?

btw - I saw my family doctor yesterday and she’s quite accepting of my diagnosis from the endocrinologist. She did say that my antibody test is still not back yet. Can you believe that? My blood was taken on December 21, 2009 and still no dice. Luckily I got my proper diagnosis without waiting. This is one of the reasons why I’m lobbying the CDA. Four months wait to determine your type is completely unacceptable!

Not only do I have to wait for the test, but my endo is a control freak. He won’t allow test results to be released to me over the phone. I’ll find out at my appointment at the end of the month. I’m really surprised you’ve not gotten your test results. At least you have appropriate treatment.

I’ve had better blood sugar control over the last three months with the increase to three medications. Once I saw some improvement in my numbers, I buckled down. I’ve been following Dr. B, exercising more and doing intermittent fasting. I’ve lost 2-3 lbs since January. It may not seem like much, but it is a difference. I’ve been able to actually see an occasional two digit blood sugar readings.

Coming up positive would presumably resolve the course of my treatment, but I also realize it may well be negative. Who knows, maybe I am just a type 2 who does not respond well to medication and has progressed rapidly. In either case, I see insulin in my near future.

Unbelievable.!! Sorry Kelly!!! That is horrific!!!

I again want to point out you can order your own GAD65 test and take it to labcorp, where they have the blood picked up and sent to the lab for testing and you get the results via email within 2 days!!

http://www.privatemdlabs.com/lp/GAD_Autoantibody.php

Sorry I should have put this up before!!!

K

Patience and persistence will pay off!!! Hoping and wishing for you all!! Its hard having to WAIT…I know, that is why I went ahead and paid $98 out of pocket to get my results!!! Can’t wait to hear the results for you and bsc!!!

Kady, thanks for the pointer. We had actually talked about this before (http://www.diabetesdaily.com/forum/introduce-yourself/39206-have-diabetes-but-doctor-wont-say-what-type#post351910). While I know I can do this, it has become a matter of principle. My doctors should do their job. I should not have to do it for them. I pay good money for competent medical advice and I want them to order it and I want them to have to read the results. And you better believe I am going to discuss this with them. If I come up positive, all my doctors who have refused me this test are going to have to listen to me discuss this issue with them. I’m going to make them write all over my chart what the findings were and make notations about this. I want them to reflect on the care I have gotten and change their behavior.

Of course if it comes up negative, I really don’t know what I’ll do.

thanx for your suggestions tho.

Awesome…as you should. And don’t worry if the test comes up negative. I read on one of these forums…I think the ADA, that a girl once took the test something like 12 or more times before it came up positive!!! So no worries!!
Have you had the C peptide test done?? I am wondering if I might ask my NEW fabulous doc, who is an endo, if I could have it done to see what my pancreas is doing…just for my own knowledge, now that we KNOW I am LADA!!!
I love that so many of us are fighters…fighting the long fight…I know it really STINKS we have to be fighters and that some docs are just stubborn…BUT GOOD FOR US!!!
I really can’t wait to hear about your results!!!
K

Kady – I live in Canada, you can’t have testing done on your own if you don’t agree with your doctors.