Importance Of Seeing Doc Notes/test Results

[Friedbrain]

I went to a cardiologist who is familiar with dysautonomia, thinking it would help with diagnosis of my symptoms. I'd been having a few particularly bad few months, and was hopeful that whatever he caught on the holter monitor would help with understanding what was going on. Ok, so he gave me the label of dysautonomia, which I guess I was relieved to get, but the whole experience seemed a little shady so I wanted to see what supported the diagnosis (not that I doubt it, because my various brain and peripheral symptoms match this better than a lot of independent diagnoses, but I wanted to see his logic).

In the follow-up, he was rather vague about the events I'd called in (I'd had numerous events including what was possibly a partial seizure that I brought on following exercise, an episode that almost tipped into seizures, and couple middle of the night episodes), waved his hands around, and declared that it was mild dysautonomia and that I should salt-load. Suspicion is my nature, and since he didn't address anything specifically, I wanted to see it all for myself so I requested a copy of the report and the raw data (the holter monitor results). It cost me almost $20 for the request PLUS 60 cents a page (and there are many pages because of the raw data), and in fact I did find that his report contained numerous inaccuracies....which leaves me ticked that I have to pay for the report What I'm trying to say is that, in reading this report-which will be sent to all subsequent specialists I see if I want this "medical information" shared for purposes of treating me-I discovered that it's wrong and therefore would affect all subsequent treatment. And there should be some accountability to that-if nothing else, I should not have to pay for it, and he should revise it to make it accurate, don't you think? Does this make any sense?

A MAJOR flaw was in his interpretation summary, he wrote that I had "sinus tachycardia up to 145 bpm with exercise". This is wrong on two different and important points! I had two incidents that occurred AFTER exercise, where I was sitting in my car and had a series of phases starting with heart racing, then dizziness, that transitioned into all-over body shaking (that an ER doctor a few weeks prior had called a seizure; whether it was or wasn't, I don't know and my neuro didn't feel a need to label). In the worst episode, the first one, my heart was racing so fast that I was panicking trying to "catch it" on the monitor and had hit the button twice within a few minutes (the whole episode lasted at least a half hour), and I found out later that neither of the first two button pushes had been recorded because apparently hitting the button too close together canceled out both. SOOOO, point being, that the holter monitor did not catch my heart racing at its peak, but about ten minutes later when I had transitioned into the shaking. This is hugely important because if a doctor read that, he would think that the heart racing at 145 during exercise was normal, and NOT understand that a heart still racing 10 or so minutes after the start of the heart racing, which was a half hour or so AFTER exercise, is NOT normal!!!! Actually, kind of scary that this important point is so inaccurately portrayed in his report!!!!

He doesn't comment on the nocturnal events at all (which, ok, it's not really a cardiac issue since they weren't arrhythmias, but they weren't NORMAL, so imho he should have just said so and recommended I discuss these episodes with my neuro...which I will do, using the raw data that I had to pay to get). It mentions a passing-out spell, which I never reported (!?)

The one helpful thing in the report is that he comments that it looks like I have a "vasodepressor element if what she is describing is true" (er, except for that insulting-sounding comment about my self-report), which he didn't talk to me about at all! But it would explain my numerous episodes of dizziness and feeling faint. Helping me understand those episodes by TALKING to me about it-what they are, what to do and not to do when feeling that way- would have been helpful, duh.

So.....I guess I paid for a diagnosis and got what I paid for. I went there to talk to him about it; he gave me the diagnosis.

[lieze]

I think possibly the issue you're going to run into is even if the tachycardia didn't occur during exercise they aren't going to be necessarily concerned about it.

Either way it's been shrugged off in my case as potentially harmless,

Where it really does affect us is it's hard for us to do normal things without this happening so it bites big time trying to live a normal life.

Where you might get into some options would be if they can try to order something to control this via medication or if you want to pursue cardiac electrophysiology and see if you have a pathway in the heart causing this.

This would be more of an issue if you were going into SVT's or afibb.

I still have tachycardia at times post ablation so it won't totally prevent that.

[rach73]

Hi,

I am really sorry about the report but it doesn't surprise me. Inaccurate reports should always be challenged.

I had to wear a pulse ox for 17 hours - (which should have picked up the POTS but it was a respiratory specialist I was seeing). Countless times my oxygen levels plummeted whilst wearing the pulse ox. I had to fill in a form to say when I got up and moved around etc. When I lay still my oxygen levels were fine. When I moved or talked they dropped.

After looking at the pulse ox reading and having functional tests to measure lung capacity the Dr told me I was holding my breath! Even though the form I filled in clearly stated I was talking when getting low oxygen readings. The oxygenation levels plummeted for over 10-15 minutes, I can't hold my breath that long!

Every Dr thats read the report since has laughed at the sheer stupidity of it. But if it wasn't something like oxygen levels and it being impossible for someone to hold their breath that long then it could be inferred that I was doing this to myself by holding my breath.

Challenge the report as it is inaccurate, you have more scope to do that being in the USA. You paid for the service the least the Dr should be able to do is complete a report accurately.

Rach

[ACB]

I'm sorry, too, to hear about the errors in your report. It happens often, unfortunately. I agree that you should call to have it amended. I've recently had to do that when I was diagnosed with Pott's Disease - a form of tuberculosis! Bwahahaha. Just because it *sounds* like "POTS" and has an ICD code doesn't mean you can slap it on a patient's problem list!

Best wishes with getting that info amended!

[sugartwin]

I ended up reporting my primary to the board over the inaccuracies on my medical records. She was my doctor for just over a year and I was surprised when she abruptly discharged me after we disagreed over whether I needed a handicapped placard. After I paid to get my records I found out she never recorded a single one of my diagnoses. Instead she had me listed as a depressed woman possibly "hypochondriac" who enjoyed "doctor-shopping." When I wore (doctor-prescribed!) braces on my knees to keep them from subluxing she recorded that this was for no reason, that "no findings supported" their use.

And I always wondered why the doctors she referred me to were so rude, condescending and dismissive.

Since that, I ALWAYS go through my records, usually during the appointment as I'm waiting for the doctor; if they're good, they won't mind.

[enko]

unfortunately I know exactly how do you feel..

My Holter results showed some odd things, but my cardio isn't worried about it, he thinks it's (just potentially!) a mild neuro problem. He sent me back to neuro who said it's a heart problem. Ha ha ha.. thank you guys, my life really isn't boring with you..

How not to be depressed with that "ping-pong-ball" feeling?

[Brye]

ACB, I had a work note that had a diagnosis of Potts as well. They had to change that one too. It was from my cardiologist, you would think he could write the proper diagnosis.

Brye

[zaks27]

Hello! Funny as I just had this experience last month. I requested all my cardiology records. Luckily, I didn't have to pay for the records. What did bother me however was how inaccurate the chart was. They said I'd said something I never said. Or they didn't tell me something that was in the charting. Really funny thing was they just keep reprinting the history and physical every visit--even if the physical was different. They made it sound that I had a physical done each visit. Which I didn't. Every visit, except the first, I had no hands on by the doctor--the office nurse took my pulse and BP. That's all. When I told my PCP about the inaccuraties of the chart, he laughed and said he'd have to reread my chart with his office, as he was sure there were some errors there too. Grrr... Why do we the patients always come out the bad guys...