talking to doctors?

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ooops, didn't mean to quote the whole post...ah well. your experience is typical of what i've experienced, of what my autistic roommate has experienced, my brother...i almost died of pneumonia in 2005, the same year my friend joe died. i was in the psych hospital for depression (gee, wonder why...) and they decided on ECT-i agreed because they had helped in the past. i'd had pneumonia earlier that summer...no one, including me, factored that in. then i started waking up from ECT sessions unable to breathe. my O2 sats were low, so they started giving me exygen before and after. i told them this didn't seem normal for me, they told me it was anxiety. it wasn't until a staff member asked me if i'd been eating blue candy and i said huh that they got scared and listened. for weeks i'd been telling them: this doesn't feel right. i'm not like this...wide awake and active, my oxygen saturation levels were below 80. i had bilateral pneumonia that required an indeterminate amount of time in the medical ICU-i was so confused the days just blurred, and there were no windows-and two bronchoscopies while i was there...then a transfer to the regular medical floor for over a week. then...they transferred me back to the psychiatric wing to finish the ECT which i was fairly convinced i didn't need in the first place at that point...but i was too sick, too tired...just wanted to get out and that seemed to be the fastest way.

i could have died. joe did die. how often does this happen? there's no way to know...isn't there something that can be done? is there some way to get people to share their experiences-like we're doing here-and maybe contact, i don't know-NAMI, or AutismSpeaks, or....? then maybe the advocacy groups could connect us with the medical community and we could change this...some, maybe. for somebody. thoughts? because i'm scared. i don't get help when i should, and now that's not an option. and i can't forget joe...and i shouldn't. he was my friend, and he's dead, and he shouldn't be. and it haunts me, and it makes me angry...which doesn't help me when i go to doctors. i know i'm going in circles here...but is it because i haven't found a way out yet or because i'm just obsessing?

I do my own research before I ask a doctor. It's not ideal, but it may be the best you can get when you can't communicate with the guy. Also, I've managed to catch a couple of things that seemed troublesome but turned out to be harmless after I checked it out at the library or on the net (influenza, pinkeye, dust allergies, heat exhaustion, that kind of thing). Running straight to the doctor would just have netted me a useless bill in those cases. (They say you are a hypochondriac if you research your symptoms but it tends to reassure me...)Thankfully I almost never have to go to the doctor because I am almost never sick; but I wonder what will happen if I get older or get a chronic health problem...

I had occasional bouts with breathing problems, my ribcage would burn and hurt for days...I complained for over 2 years on and off about it, couldn't afford emergency care or another Dr. at the time, as I had NO health insurance.

But since I had a notations on my record as having problems with "social anxiety", the Dr. chalked it up to "panic attacks", and referred me to counseling. Finally I happened to get a different Dr. one day when I was gasping for air and he ordered a breathing test done. I have asthma, luckily it's mild or my "panic attacks" might have killed me.

yeah, that's exactly what i'm talking about...again. what is up with this? i don't think doctors are inherently lazy or cruel or any other across the board negative thing. but this just keeps coming up. sometimes things happen because they can-there's no consequence, so there's no motivation to change. but there is a consequence-a real cost in the health and even the lives of their patients-and i'm quite sure very few medical professionals are indifferent to that. so if the awareness were somehow raised, that very awareness of the danger could serve as a consequence: this is what can happen if i let assumptions rule me, and i don't want to be the cause of that. or am i being naive?
you know, i suppose it's good that the medical field understands that emotional stress can manifest in physical ways-a friend of mine had her panic disorder diagnosed when she went to an ER with what seemed a LOT like a heart attack. they treated her with nitroglycerine for the chest pain...when there was no response-as there would have been had it been angina or a full-fledged heart attack-they kept her on oxygen and the monitor but...after explaining what they thought was happening...gave her some valium iv. she says it was all handled very respectfully. this also happened in tokyo, where their medical system has a host of problems but a sharp delineation between mental and physical health with accompanying ranking of importance is not one of them.
if we don't separate mental health from physical health then no separate values can be assigned on that basis. which would mean that a doctor would not only be able to tell a panic attack from a heart attack with the right diagnostic tools, but their brain wouldn't shut down once the issue of mental health entered the picture, and they would go on to employ those diagnostic tools.
i can see it...the more i listen to the rest of your stories, it puts it into perspective and the problem is taking shape. i just don't know what to do about it.

It took me 3 months of seeing numerous doctors before I was re-diagnosed with epilepsy. And I was even telling them "I have a history of a epilepsy and I'm feeling the exact same way I always felt when I had seizures as a child." I had one doctor tell me there was no reason i couldn't work - this in response to my list of complaints that involved not having energy to chew my food and being unable to physically get out of bed on some days. And that was the doctor who should have recognized I was having daily seizures immediately upon one conversation with me - thats what the second neurologist told me, and thats what my childhood neurologist strongly implied should have been the case

one of the big problems with the doctors is that they refused to look at the big picture - ie none would consider anything that happened last summer because that being nearly a year ago meant those problems had to be unrelated. When in actually considering last summer was one of the surest ways to determine that my epilepsy had returned. Or they would only focus on their speciality - ie the first neurologist didn't want to hear anything about periods, nose bleeds, or mood swings when all three of those were either caused by, or excaberating the epilepsy.

Then there was the not believing me. For example, this year I discovered that eating a peach or a pear resulted in my having to sleep all day. Most doctors just brushed that off as something not true, but luckily the endocrinologist didn't, even though she readily admitted she never heard of anything like that. Here what was happening was that the sugar in the fruit was inducing seizures which was why I had to sleep all day.


The general doctor the school sent me to believed that I was telling the truth about most of my symptoms but she also decided immediately upon visit 1 that it was all caused by sleep apnea and couldn't possibly be caused by anything else - well I did have sleep apnea but it was so mild that it wouldn't have been treated if not for my severe exhaustion. There is also the possibility that it was nocturnal seizures that caused me to stop breathing rather than sleep apnea - I actually had a few bad seizures the night of the test, but it was interpreted as fitful sleep. They even commented about how I was flipflopping around all night. I wasn't familiar enough with the test to realize that all their monitors wouldn't have also picked up seizure activity. Actually I went to the endocrinologist because the general doctor refused to test my t3 and t4 levels and I knew something had to be wrong besides sleep apnea and my symptoms did resemble the thyroid problem my bf was just diagnosed with. The general doctor was sort of like "you have a cpap, problem solved. Nothing else can be wrong." The endo was the one who sent me to the hospital and told me I was better seeing another neurologist. Otherwise i'd still be having doctors tell me nothing is wrong with me.

The ER doctors demanded I tell them what illegal drugs I was taking and then decided I was psychotic after hearing my description of my current seizures and my telling them how that was almost the exact same as I had experienced for - the only difference being my aura had changed locations

The first neurologist I saw ruled out the possibility of having even one seizure based on the fact that I had a normal EEG. The second one said the firsts technician was known for messing up the EEG test AND my type of seizure almost never shows up on an EEG. When she repeated the test I had constant seizure activity with 6 seizures - and that was after starting seizure medicine. its lucky i didn't kill anyone since I had to drive around and try to work for three months because of the first neuro's idiocity. As it was I was getting sent home and driven home from work by the school nurse at times.

My epilepsy was actually so bad that when the second neurologist went over my test results she said she was amazed that I was capable of carrying on conversations prior to starting the medicine.


I've no memory of this but I did go to the uni health center for all the same reasons I sought help for this year back in 2004. The paperwork i came across told me all I needed to do was take iron supplements and my problem would go away.

When I went to the hospital in March with severe stabbing pain in my gut, I first told them that I was autistic and they had about 30 minutes to get what they needed out of me, because I was shutting down quick. Of course, they screwed around about it. Finally, though, the surgeon came in and gave me 4 (count them 4) shots of morphine in 2 hours to get me uncurled so he could examine me. When my husband finally showed up, the surgeon asked him if he knew I was autistic. My husband does know. So, then the surgeon told him that a 10 on my pain scale was prolly more like a 30. I thought that was kinna funny. At least he got it. Most of the doctors that I come into contact with don't get it. The nurses certainly didn't. I understand what you mean about the not paying attention to your body thing. I bump stuff all the time and get weird bruises and have no idea where they came from or what I hit.

The 1-10 scale does not work for us. My son is also dxd AS and he had a chest tube in. Just out of surgery with almost no pain med they asked him what his pain was and he was saying 2. I had to remind them that he was autistic and it prolly was really more like a 15. I have to remind people all the time that we don't register pain the same.

Triangular_Trees: all i can say is "dear god in heaven how hideous"

i've been accused of having "pseudoseizures" before...asked the doc what that was, thinking maybe he thought it was another medical condition that manifested as something resembling a seizure. nope. he said: "this." and proceeded to stand there, make an idiotic face, and shake.

the problem with epilepsy-as you well know-is that absolutely freaking anything can lower your seizure threshold. whenever i have one i have to go into detective mode and try to figure out what's changed. i now suspect that a large part of my problem of late has been the until-recently-undiagnosed heart condition. oxygen saturations drop, so does the seizure threshold. (i also have sleep apnea, and my c-pap died...waiting to get approved for a sleep study so i can get another)

another problem with at least american (usa) medicine is over-specialization. every specialist thinks if they've done their part and you're not well, then you're faking or not doing something right. my roommate, also autistic, has horrible diabetic ulcers on her feet. she was sent to some specialist or other, who decided since she wasn't improving she wasn't following the program at home-and now they're refusing to treat her! meanwhile, the ulcers grow worse, she can't feel her feet to know how bad they are-and can't even look at them to see what's going on because she's blind. just found this out today, am worried sick but there's nothing i can do. she is trying to change doctors, because the primary care guy she goes to insists that she must be overeating or she'd be losing weight. i live with her. if anything, the woman does not eat ENOUGH.