I know you that most of you guys already do this or know how important this is, so this is mainly for any "newbies" who are in limbo.

If you don't have copies of all of your test results, get them. Why? Well, doctors not only don't have to tell you all the results they sometimes leave things out on purpose. For example, I have had atelectasis (a small collapse of a lung from my not being able to breathe in well enough from MG) on x-ray or CT which they haven't even told me about. If I know I have that, I use an incentive spirometer or breathe in deeply (if I can) to help alleviate it.

Case in point. I first noticed I had ptosis in March 2000. I went to see an MG "expert" in April. He pooh-poohed everything I told him, especially the part where I thought I might have MG. Some neuros do not like it when patients "think." Or talk. One of his comments, when I described how weak my muscles became when I ate food like a bagel (a soft, warm one) was "It takes a lot of stamina to chew a bagel." Not the comment of a nice doctor. He only ran the AChR antibody tests. They came back negative. The modulating antibody was at 18% on a range of 0 - 20%. Because of that one negative test, he didn't even do an EMG. I wondered back then too if an antibody result could be "on its way up." Two months later, I saw a neuro-ophthalmologist who said I indeed had ocular MG.

In March of 2002, my antibody tests were rerun. The doctor said he would do the AChR and the MuSK. Well, they did the AChR at a lab that wasn't as reliable as another one. After getting the results, he sent the vial meant for the MuSK lab to another lab to redo the AChR again. I never got a copy of the lab. Even after I requested the antibody tests specifically, I never got that second lab. The results were buried in his notes, which I often don't read. Why would I? He had undiagnosed my MG during that last appt. (when he knew the results), later dropping me as a patient and "terminating" me from the clinic. Why?

Nearly seven years later, when I was writing up complaints to our State's medical board about some doctors, I finally read those notes. I had a positive antibody test. SEVEN years of not knowing for absolutely sure that I had MG. Seven years of going to a neuro out of state and spending all that money. When I asked the clinic again for the labs, seven years later, they said they didn't exist. I did some digging and called the lab that did the original lab. They found it, thank goodness, and sent it to that first clinic which then sent it to me. Good grief.

The doctor in question had written in his notes that the antibody was "slightly" elevated. No where on the original lab did it say "slightly" or give a range of results like "slightly" or "moderately" or "highly" elevated. It simply said that it was H as in "high."

So why would a doctor keep a test result from a patient, allegedly? To keep his doctor pal, whom he mentioned during my last visit, from being part of a medical malpractice lawsuit. That first neuro had been dead wrong, had treated me poorly and not even done all the MG testing. All based on prejudice and whatever other reasons he had for not treating me well.

Doctors are human. They make mistakes, sometimes on purpose. Test results speak for themselves and you need to get ALL of yours if you want to, or need to, build a "case" for what is going on with your health. It's sad that it has to be this way sometimes. And, no, I never even hinted at suing anyone!!!

I've had so many examples of this throughout my life, where a significant test result is not given to me or told to me. So please don't assume that all is well just because a doctor says so. I'm not saying don't trust your doctors. You absolutely need to know the condition of your body and you can't fully know that without all of your test results.

This especially applies to breathing tests. So often, neuros will say it was a "lack of effort" causing the poor result. Those tests, when done by experts who keep you doing it consistently, are reliable and MIP and MEP reflect neuromuscular weakness. Also, getting a baseline reading of those tests are good so they can compare the results when you get worse.

I went through a significant amount of pain for years due to the "games" these doctors played and I wouldn't want any of you to go through that. Get your test results. Then get a second opinion.

Annie

Dear Annie,

As a physician, I want to say- "no, she is wrong, doctors aren't like that. "

but, as a patient, I can sadly say, that I paid a horrible price for thinking that way, and not realizing that although many (and I do hope most) are not, some definitely are.

why is that? why do people that supposedly dedicated their lives to help others act in such a way?

I wish I knew the answer to that. I wish I knew why people that don't really care about other people choose this profession. is this because their mother wanted them to be a doctor? who knows.

one of my peers in med. school used to say that his parents were very liberal in letting him decide on what he wants to do. he could choose if he wants to be a pediatrician, gynecologist, what ever. This guy hated medicine. he really wanted to be a mechanic, but his father- the dean and his mother, one of the leading teaching professors, would clearly not hear of that.

what kind of a physician has he become, I really don't know.
some of my colleagues keep on telling me how bothersome the patients are, how they keep on nagging them etc. etc. I would clearly not want any of them to be my physician, but you don't always know beforehand.

one more thing. Regardless of the reasons that Annie gave, I advise all my patients to keep a file of all their medical letters and test results with them. This is extremely helpful when they consult another physician. modern medicine is so specialized that one specialist could easily ignore or not be aware of what another one said or did. and more times then not, medications are given by one, that are contraindicated by another. the GP is supposed to organize it all, but they are not always able to keep up with everything.

I recently had a patient who went a series of very expensive tests, and was on the way to go a few more, just because none of those that saw her was aware of a new medication that was started by another physician involved in her care.

So, yes Annie, you are perfectly correct. patients should try and keep a track of all their medical letters and tests, and when they have concerns regarding their quality of care, ask to receive coppies of their charts. I have unfortunately learned that the hard way.

It is true that during a busy day in the clinic it is not always convenient to start printing test results. so patients should also be understaning to that, and not insist that it be done on the spot, but request that at some point they will receive it all.

patients should also understand that physicians are people and can make mistakes, not on purpose. those can be missinterpertation of tests, judgment errors and many more. even excellent, caring and dedicated physicians are error prone, as they are not gods.

alice

Thanks, Alice.

I know doctors aren't perfect but it's the intent of those particular doctors of mine that was so reprehensible.

I saw my primary doctor yesterday. On the "drug and drug interaction" list that they print out and give to patients these days, it listed "not documented" under my medication reactions. It made me feel like they didn't believe me. They are covering their behinds in every aspect of doctoring these days, which I find truly sad. No more trust, no more faith. You have to document every little hiccup for them or they don't believe you. Which is one more reason to keep your medical records at home.

Because it has been "mandated" by our government, they are now also asking patients to sign a form that says it is okay for them to gather ALL of your medical records. And I mean ALL of them. I personally find a national database of my medical records to be against my civil rights. I did not okay them to get all my records.

I had a neuro say in 2005 that he thought I wanted to have MG in order to get social security. Character assassination of a patient isn't one of my favorite doctor traits. If I had wanted social security, I would've stopped doctoring in 2002 when it was granted to me - retroactively to 1998. But now that "opinion" of this one doctor who doesn't have a clue about my character has been "published" all over the place; as if it were a fact or true. Doctors don't often oppose the opinion of other doctors. So if there is that kind of statement in your records, all doctors in the country can read it and may think the worst of you.

Doctors often get away with those kind of statements about patients because they say they are "opinions," which do not meet the standard for libel or slander (defamation). However, since no one dares to challenge a doctor, they are considered a FACT and, in my opinion, are libelous.

You're right of course, Alice, there are a lot of reasons for keeping medical records. Like those x-rays. They recycle them because they contain silver and are expensive. I have gotten and kept those too. And biopsy slides are useful. There are so many reasons for getting your records.

I am very sad about this trend in medicine which makes patients "the enemy," as if doctors need protecting from us. I'm sad that so many mistreat patients. I'm sad that some cannot seem to do their job well. All that means is that we patients need to be even more proactive about our health. That's harder to do when you don't feel well. It really shouldn't take so much work on our parts to get good medical care but it's a reality these days.

And nurses, assistants and transcriptionists can make some amazing typos and mistakes in records too. I'm dumbfounded at the amount of mistakes I've found, even on the same page. Like incorrectly saying I had bacteremia in the right arm and then saying correctly a paragraph later that it was the left.

I'll say again, there are lots of really good doctors out there. But they aren't the ones you need to be wary of - most of the time.

Annie

Annie,

I understand what you mean, more then you think.

there are some very unfortunate trends in modern medicine.

I think it is up to us (physycians and patients), as well as health care management to do something to change this.

I recently read a small book called-"medical memoirs", written by one of the former editors of JAMA that raised similar concerns.

he said there are no "good guys" or "bad guys" in this story and there a lot of good intentions, and a lot of funding, but the bottom life is with the quest for cure, we forgot care.

this is taken from my chart during my last hospitalization, in an MG center of excellence-

“Having episodes of weakness. Unable to walk or swallow. Patient very scared. Has been on BIPAP once. VC=1.58. Dr. B informed who does not want to see patient. Dr. F early thought weakness may be functional.”

"patient appeared to be sleeping when I went to give her the 23:00 dose of pyridostigmine. patient appeared very weak, not speaking very well and unable to raise her arms above the bed. unable to record VC. Bipap applied and patient observed over night."

I am not going to describe the horrors of that night, and how I felt when my respirator mask was taken off my face to measure my (unrecordable) VC, only for them to document it on the chart.

so, yes I know exactly what you are talking about.

but, not all medicine and not all physicians are like that, and we need to try and work with those that do care, and want to make it different.

I am very sorry for what you've had to go through, Alice. I do know that feeling of fear, when the only ones who can help you aren't.

I know that there are a lot of good doctors out there. That doesn't really help my PTSD due to doctoring trauma. Yes, we all need to work at reducing the percentage of "bad" doctoring but doctors are ultimately responsible for themselves.

It was probably a naive hope of mine that my book on doctoring, which I finished on my birthday a month and a half ago, will be published and read. Or that it would do any good. But if we don't at least try to make doctoring better, who else will?

Recently, I read through the pile of records I got of my Dad's after he died. He had a cardiac infarct over a year before he died that none of his doctors told us about. Errors and mistakes can be a small as a typo or as large as a coffin. So get your records.

Annie

I am a retired banquet bartender that served at receptions and dinners for all kinds of company functions. Drug companies included.

At one drug company function the captain was told to make sure the food servers were out of the room during their presentation. The attendies were all doctors. The message never got to my boss, beverage, so I remained in the room.

During the presentation they described the different meds they had to offer depending on whether the doctors wanted to treat or cure. Sad.

Tony

That is indeed sad, Tony. Not that I'm surprised. Money is more important to them than us peasants get appropriate care. Thanks for sharing that. I hope you are doing ok.

Annie

I am doing better this year Annie. Last year was hell for me. So i am doing ok.
Thanks;
Tony