Wow, I'd recommend that anyone who follows biology or med research request a copy of their medical record and check for the V65.2 code.
I've had a tremor for years. It was getting worse so I finally went in to have it checked out. I said made the mistake of telling the nurse and GP that I was concerned I had Parkinson's since my Grandfather did and was hoping it could be ruled out. I've followed PD research the 90s probably knew too much. The appt ended with the doctor acting out late stage PD motor behavior even though I told her I was very close to my Grandfather from his earliest stages until end of life.
The neurologist she referred me to diagnosed me with essential tremor and I was relieved not to be diagnosed with PD. I thought the GP was just incapable of listening, but her viewing me as V65.2 would also fit.
I'm requesting my medical record.
Exactly.
I don't mean to scare anyone further, but I feel I should mention this next thing because it is becoming more and more common in the medical profession and now at the point where it is being abused and hurting patients. We see more MDs who have no training in psychology or psychiatry and very little background knowledge of their patients slapping the DSM code 300.81 in their files. 300.81 is somatization disorder (also used for this same diagnosis: F45.0). All of the Dx code numbers can vary a bit by country so if you'e not in the US then you'd have to google around, I think.
Anyways, more about somatization disorder: its definition has recently been altered to something that is more general and has a wider scope. It used to have a fairly strict set of criteria and diagnosis was uncommon. But now it's been combined with other somatic disorders and the rate of diagnoses exploded to the point where its being questioned in the literature because there is a very wide window for people with real undiagnosed medical problems being viewed instead as psych patients.
You know those old Mystery Diagnosis shows? Where someone has a problem that isn't immediately uncovered by their initial doctors, goes undiagnosed or misdiagnosed for years, bopping around lots of different doctors and specialists before chancing upon a doc that actually figures out what's wrong with them... when this happens to people now (and it still does quite a bit) they are at a significant risk of being slapped with somatization disorder Dx and no longer taken seriously. The doctors do not have to inform patients of diagnoses they suspect, they make notes for other professionals to read.
I have a perfect example of this nonsense by personal experience: last year I had a pretty scary period of several months where I was having palpitations, random afib attacks, excessive thirst, bleeding under the skin (I still have the petechiae), chest pain (both crushing and stabbing), slow shallow breathing with heavy feeling chest, apnea and other weird stuff. I was taken in ambulance twice, in afib the whole time, and when I get to the ER they first think I'm having a panic attack (I never had those before). Of course they give me ativan which does not have any effect on the "attack." I stay in afib until some initial test results come back showing I had low potassium. So I would get potassium, a lecture about caffeine (they thought it was the half can of red bull, the smallest can, which is bullshit because I used to be able to chug the big can in about 10 mins just fine), be just fine in 30 mins and go back home.
I kept having more attacks (no caffeine), most of them occurring right around bedtime. My GP had me go to the hospital where they stuck a heart monitor on me to wear for two weeks. By that time I was taking potassium supplements periodically through the day and I didn't have any more afib arrhythmias, so naturally the results of the monitor didn't show anything abnormal except "stress." It looks bad for me because it looks to the docs like my problem is anxiety or something psychosomatic, even despite the known problem with potassium.
Right around this same time, I caught a cold from my daughter which eventually settled in my lungs. This commonly happens to me, my entire life: I catch a cold that everybody else is over with in a week, I have the sinus congestion/pressure and mild-moderate cough for about two weeks, then the sinuses clear up but the cough continues and worsens, becoming more phlegmy, with scary chest heaviness and difficulty pulling breath, for at least another 2 weeks after that. It's not uncommon for me to start getting the crackles and pops in the lungs and for me to feel them as bubbly, tickling sensations. So I go to an urgent care clinic rather than my GP just because I can get the appointment faster. I get sent for chest x-rays then given the usual antibiotics, inhaler and codeine sryup. After I recover I went back to that same clinic because I was having scary thirst, more petechiae, more fatigue, and chest and abdominal pains, and happened to see the same doc there. She orders a standard comprehensive metabolic panel, a CBC, a thyroid test, a lyme test, and a hepatitis test. I go back and request a full copy of the results: they didn't like that I did this, this is not what the average patient does. Everything came back negative and normal, except that I have borderline lows and highs in a few places that made me uncomfortable given my knowledge of medical tests. The thyroid was especially suspicious and the lyme was suspicious; I know that these tests have some issues and are not 100% indicators of problems or lack thereof.
I didn't tell the doc what I was thinking because I was already wary at that point about being slapped with a hypochondria Dx without my knowledge. But I still had the mad thirst no matter how much water I drank, and still petechiae all over my body some starting to appear on my face, so I went back one more time to this clinic. I requested testing for heavy metals and vitamins (I had been wanting to ask for these test for more than a year before these symptoms appeared), the doc gave me a dismissive "okay we'll take care of you" and gave me an order to take to a local lab. I look at it and there were no check marks on any metal test or vitamin test. Instead there was a request to test for porphyria. While I didn't object to this test I was pissed there was nothing there for metals, and that's when I recognized one of the diagnostic codes handwritten on the lab order: 300.81.
Motherfucker. I was livid.
I actually still have this lab order because I never went to get this test. I did not want this in my record from some cunt who doesn't know a damn thing about my history other than I had recently been to a neurologist, an endocrinologist, and a cardiac specialist and that I was royally pissed about the neurologist who didn't know a damn thing about migraines (the only reason I requested a referral to a neurologist) and kept trying to test me for seizure because that's was written on the referral (which I had no knowledge of, seizure was never discussed ever before that). I was 32 years old at that point, one of the required criteria for a diagnosis of somatization disorder is a history of symptoms before 30 years of age. Of course I met none of the criteria except interest in my lab results, seeing different doctors, and medical knowledge unusual for the average patient. I barely saw any doctors in my 20s (only the ones in ER) because I had no insurance and my only problems were migraine and occasional respiratory or kidney infection. So how could I have a history of somatic disorder. This fucking doc-in-a-box had no cause for doing this to me.
So, yeah. I wonder what else the docs are saying to each other. I am going to request as much info as I can and I'm hanging onto this lab order. I actually think I might have a lawsuit building against the local hospital (all of this shit happened within their network of doctors and offices). The most hilarious thing about that is that another doctor (also within the hospital's network, lol) busted them out and flat said to me "that's malpractice" when I told some of my stories (I have more lol). Before that, it had never occurred to me that there was something actionable about the way I was treated.
Well TL;DR, nearly all of my scary symptoms went away as I kept up the electrolyte supplementing, except petechiae, essential tremor, and mild periods of shallow, upper-chested slow breathing and breath holding (which I believe is anxiety-related and "trained" into my body from last year's experience and should theoretically solved by consciously correcting for proper breathing until it becomes automatic again). The potassium issue is still a mystery, why did it start last year, etc (after MRIs, x-rays and whatnot, my heart is fine so it's not that) and I still take potassium pills 4-6 times a day because if I don't, the hypokalemic symptoms start creeping back.
I screwed up by revealing biological and pharmacological knowledge to docs that they are not accustomed to hearing from patients, even though it was very little because I was already aware of other potential problems this can cause such as pissing off or embarrassing the doctor. This still happened to me even though I never suggested any diagnosis of any kind because I was already afraid of a psychiatric diagnosis due to my previous experiences with migraines and ignorant ER docs. And because I know doctors do not like it when patients come in armed to the teeth with shit they found on the internet.
Edited by Duchykins, 07 July 2015 - 06:04 AM.
