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Old 07-21-2017, 12:18 AM #1
Starznight Starznight is offline
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Default Do doctors forget....

Okay, so I'm going in for a baclofen trial, to possibly get a baclofen pump put in to treat my muscle spasms... but once again I felt the need with the neurosurgeon I was seeing to defend my parents and pediatricians. Either I look incredibly young for my age and they can't be bothered to read my DOB or they've forgotten that half the "tests" and technologies we have today simply weren't being used 30+ years ago. All of my doctors have asked why the doctors before them didn't test this or test that.... why didn't they do an MRI when I was six and going to PT for spasms? Why didn't I get treatment?

Ummm... let's see, the first MRI machine was built in 1977, but it took another 10 years before Dartmouth college in NH got one (I was 8 by then), and it was "experimental" technology so not covered by health insurance until the mid-90's... I was already in my teens and just at that point lived with it and largely ignored the constant pain. While MRI's were covered by insurance in the mid-90's they were still hard to find places with them, even living by Jacksonville FL, the largest by acreage city in the US, they didn't have any when both my knees suddenly swelled up one day and refused to bear any kind of weight.

There was nothing the doctors could see in the X-rays so it was chalked up to my chronic leg spasms and well... continue to live with it and here's some braces... the knees healed about 2 months later as well as they ever would again at least... but there was no MRI machine without my travelling for quite a ways, and the images they were getting then were still considered sketchy at best.

When I torn my shoulder at age 10, sure Dartmouth had an MRI machine, but the cost for it was astronomical and deemed unnecessary it was pretty clear I tore it, they didn't need some fuzzy image to confirm that, and my folks certainly weren't neglectful of their child's health because they refused to take a second mortgage out on our house for an MRI.

And yet when I rely my medical history to the doctors, they all look at me aghast! Like how could my parents not take me for an MRI of my brain sooner, why did they do a lumbar puncture when I was six? (Well they did one when I was 5 checking for spinal meningitis, and still held the belief you could only get like 3 in a lifetime or you die!) so... no they didn't see the need to put me through all that. The needles were larger then, the risks were greater and they weren't being done on tilt tables or under an active X-ray. It was 5 nurses pinning you down while a doctor stabbed you literally in the back. A bit traumatic and high risk procedure "then". Now pfft it's child's play.

But we've come a long way in a very short amount of time with medical technology, many of the things we can do, the doctors of today didn't even have access to while in med school! And yet they expected me as a patient to have been able to go tripping on down to my local pediatrician and get MRI's and lumbar punctures testing for a disease that when I was 6,7,8 etc there wasn't even a DMD for? Let alone the tests being available... and my parents are supposed to feel guilty over the fact that I couldn't?

Seriously, am I alone in this, or has anyone else found their doctors to failing in remembering the leaps and bounds we have come in such a short time? I mean, who here remembers windows 95 and the taking off of this fad thing called the "internet!"... '95... not windows 3.0 and certainly wasn't taking off on the commador 64's (one of the first inexpensive home "computers" that didn't come out till I was in the 4th grade). Heck the first blackberries didn't come out till I was in high school and weren't really owned by the "commoners".

I do miss the windows '95 days, on occasion, as I sit in my living room typing this up on my iPad . 12 years... we went from text only internet that took forever to load a page and lucky if there was at least 1 computer in the household, to even my GB having an iPad at age 2. And the doctors want to know why I didn't get tests done 30+ years ago that the doctors then had barely even heard of, so I could treatments that weren't even invented yet?

And I will grant you, I'm not so old that "when we were kids we had to walk 20 miles to school in the snow uphill both ways! And we only had dirt to play with sticks weren't invented yet!" But I'm also not some 15-17 year old kid, who had access to the majority of the things the doctors now seem to think I should have my whole life. I mean I did have to walk to school, and the routes I took were uphill both ways, and it was in the snow...but it wasn't 20 miles, and sticks were invented by the time I was a kid and yes I played with them... gosh i really feel old now

But all the more my point, I was an active child growing up in the 80's, we played in traffic, waterguns were in every kid's hand the more realistic the cooler, we watched Saturday morning cartoons and that was pretty much it for tv, for the whooooole week... unless you were sick then you had to watch your grandma's or nanny's "stories" (soap operas). We read the Sunday comic strips and were disappointed when they added Dilbert. And if we survived the 80's with our bones still intact our parents could pat themselves on their backs for a job well done! *ignore the permenent and disfiguring scars*

Scars were cool! The stories of how you got them even cooler! Not the late 90's kids who get them at tattoo parlors. We EARNED them! And our parents before us had even better ones, with truly awe inspiring tales to match. And yet the doctors are still aghast that my parents, and my pediatricians didn't do more... there simply wasn't a "more" available.

Anyone else running into this issue? I don't know what else to say to the doctors aside from... they didn't have that then.... sorry for being born 20 years too early, heck I spent an extra month in the womb... must be my own fault for not hanging around in there an extra 240 months, or is it my parents fault for not giving birth to me while my mom was going through menopause, such terrible parents.

Sorry for the rant, had to get that off my chest. It's slightly flattering if it's just because they think I look so young... but aggravating when I need to explain it every time I see a new face at the doctor's office.
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Old 07-21-2017, 10:50 AM #2
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Just an FYI:

The MRI was being used in the early 80's and they were not considered experimental. My MRI was done in 1985 and was paid for by my Health Insurance.

Quote:
why did they do a lumbar puncture when I was six? no they didn't see the need to put me through all that. The needles were larger then, the risks were greater and they weren't being done on tilt tables or under an active X-ray.

A bit traumatic and high risk procedure "then".
Lumbar Punctures, referred to as spinal taps years ago, were not "high risk procedures" to the best of my knowledge. My husband had one many years ago when he was a kid for spinal meningitis, which he was diagnosed with. I had one done in 1985.
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Old 07-22-2017, 08:23 PM #3
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Please do not group all doctors together. They are just people, different from each other. I consider myself very lucky having a doctor for the last 5-6 years, Johns Hopkins smart, a humanitarian, who never tries to sell me false hope, does his best for any problem i ask him about.
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Old 07-23-2017, 06:46 PM #4
Starznight Starznight is offline
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I do know that doctors are all just normal humans (met a small few who didn't seem to think so themselves) but even so every one I have met in the past 10+ years has been that way, and it's been a lot of doctors, nurses and even receptionists who give that shock response over no one doing anything before when I was a child. And it gets my feathers in a bit of a rough when they give my mother accusing stares for neglecting my care in early childhood.

And I do know that I don't look my age, my own DH has been mistaken for my father on more than one occasion. I still get carded at 37 and flattering or insultingly even after a clerk has my ID they check it to make sure it isn't a fake and still ask me to recite my DOB. I've been out with my GB and get comments about how wonderful it is to see such a great young mother, and once one lady even asked the GB if she was having a fun day with her sister! (Really sister was the first thing she thought of I'm 37 the GB is just 3) .

So I can't entirely fault them for looking at me and initially thinking I'm a little kid, but at the same time they have my chart, my DOB is written at the top of every page, and they act like the 79 must be a typo and I was born in '99 or something I dunno. But even after clearing up the age thing as thus far has had to be cleared up before we get into much else, the accusing stares begin as i go through my medical history for them. It's just sooo frustrating. After a few visits we move past it all and they seem to no longer be focused on how young I look but reconciled to the fact that I am much older than I appear and we get on fine, but I always dread those first few visits and defending my parents and pediatrician and my first general practitioner who thought it could be long before my diagnosis but as there was no treatment at the time, why bother doing all the tests to confirm something he could do nothing about?

Granted it was long after that that treatments started coming out, but I'd lost my job and insurance and my DH made too much for me to get any kind of Medicare and disability was out because of insufficient work credits by the time it was determined I should and really could apply for it. Day late and dollar short has been my life's story it seems.

Oh well things will be as they will be, and hopefully in another 13 years, like my grandmother and mother, I might finally look like an "adult". And going to a doctor for the first time will become a little easier.
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