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 Post subject: A little bit of history
 Post Posted: Tue Apr 10, 2018 12:10 am 
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I’ve had a digestive disorder as long as I can remember. But I never considered it a “disorder”. It was what I thought was normal.

In my mid-twenties I started having episodes of severe upper abdominal pain that always started in the early morning hours. I’d go to bed feeling like I had indigestion then I’d wake up around 1:00 or 2:00 am with a horrible pain that was just below my sternum.

As the pain increased it bore straight through to my back. I could not find any position of comfort. I couldn’t sit, stand, or lay down. Being on the bed was the worst. Sometimes I’d prop myself in the corner of the sofa with pillows behind my back, pillows under my knees to keep them bent, and another pillow between my chest and knees to apply pressure to the pain as that seemed to help, and gently rock myself back and forth to utter exhaustion until I fell asleep. This went on for hours.

When I’d wake up, I would be tired and my abdomen would be sore and I wouldn’t be able to eat anything heavy if I ate anything at all. By the next day I’d still be leery about what to consume but for the most part things seemed to be back to normal.

These episodes occurred infrequently at first. But eventually it started happening 2 - 3 times a year. I have no earthly clue why I never saw a doctor about it. I don’t recall even ever mentioning it. I don’t even think I was seeing a doctor on an annual basis yet. I think my train of thought was, I want to see the doctor when it’s happening so they can see what is going on as it’s happening. Going to the ER never once entered my mind. I grew up believing you only go to the ER when it’s “an emergency”. You know, blood and guts and broken bones. Or you know, a heart attack or something.

When I was pregnant with Thor I had mentioned the problem to my OB and she said after the birth she’d do an ultrasound but she never did. And two weeks later we moved and I had all new doctors and promptly went back to my usual routine of ignoring things that shouldn’t have been ignored.

When I turned 50 I had scheduled the obligatory colonoscopy but a recurring cyst on my left ovary took precedence and I ended up having my left ovary removed. That was a scary moment in time.

I didn’t reschedule the colonoscopy until the following year and during that time I was experiencing what I assumed was severe acid reflux. So I asked to have an endoscopy done along with the colonoscopy. Nothing like having them go in from both ends. ;)

In all honesty, there’s nothing to getting a colonoscopy. The concoction they give you the night before to flush your colon really isn’t that bad. Well, it definitely needs some sort of flavoring added to it in order to be able to consume it. I mean it seriously tastes like boop but the flushing of the colon was much easier and way faster than I anticipated. Once you’ve consumed all the liquid you’re done. Liquid in, liquid out. So don’t be hesitant about getting a colonoscopy. They put you under and before you know it you’re awake and going home.

The endoscopy revealed I had inflammation in my esophagus and a hiatal hernia among a few other things and from that point on I assumed whatever pain I had in my upper abdomen was hiatal hernia related.

So here we are. I learned my lesson, a day late and a dollar short. When your body talks, listen to it. It’s telling you important things. Don’t ignore it. Also, don’t always trust your PCP. Trust your body and what it’s telling you. I told my PCP about the loss of appetite and the sudden weight loss. For the last two years that’s been a standard question that I always answered no to. This time I said yes and his response was: eat more.

I have no doubt that I wanted to believe him more than I wanted to believe what my body was trying to tell me. Learn from my mistakes. You, and your loved ones, will be glad you did.

<3

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     Post Posted: Tue Apr 10, 2018 12:36 am 
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    Hard lesson to learn. :(

    The thing is that some doctors still think that women are more prone to hysterical illnesses, even when they're seen them for years. It's infuriating. "Eat more," is the kind of response I'd expect to get from one of those. You're obviously not a complainer, he should have picked up on it.

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     Post Posted: Tue Apr 10, 2018 1:11 am 
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    Women are still treated as children medically so often for sure. And doctors tie so much into food and weight and it completely masks other things. To most doctors we are in and out and a speedy production line (this goes for men too). You are special to you and you're one hundred per cent right you need to listen to yourself. But we're taught, as women, and as non-doctors, to yield to authority so much. Culturally even.

    I think it's brave of you to share this. I think you're a strong person for taking something like this and offering that experience up to HELP others. To protect others.

    We normalise too much.

    Deep respect for you Linda. <3 <3 <3

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     Post Posted: Tue Apr 10, 2018 1:41 am 
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    My wife and I went through the same thing for her: Years of continuing, undiagnosed illness. In her case, we kept going to different doctors and getting different diagnoses (no gall stones, yes gall stones, still getting sick after surgery, etc).

    When her symptoms resulted in severe anaphylactic reactions, we finally ended up at a good allergist who figured out her problem: Lone star tick bite (technically, "alpha-gal 1,3 galactose allergy"). Basically, she could be killed by a drop of milk or a piece of hamburger, just like a peanut allergy.

    In her case, the treatments are handling everything fairly well, and she has to be careful, but it's manageable. However, in my heart, I can't forgive some of doctors who were dismissive and ignored her concerns. Not the ones who tried and were wrong, but the ones who didn't seem to care.

    Linda, paltry as they are, you have my thoughts, prayers, and support for as long as you want it.

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     Post Posted: Tue Apr 10, 2018 4:26 am 
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    A definite plus one to this.

    My mother had headaches, fatigue, sickness, a whole bunch of other things in the couple months before a doctor pieced enough together to ask her to take more tests, when making appointments, they only have you give one symptom and she was more worried about being sick.

    The thing was the doctor didn't ask her is there anything else and she, I think pretty much for the same reasons, didn't bring up anything else, so they were treating one symptom among a few in a way that ignored the rest of the problems she had.

    I think it is very brave of you to share this kind of thing and if it gets one person reading to listen to their body and get things started sooner, then it is all to the better.


    Last edited by CandleInTheDark on Tue Apr 10, 2018 11:24 am, edited 1 time in total.
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     Post Posted: Tue Apr 10, 2018 6:51 am 
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    At 13 my daughter started having "vertigo" spells. A handful of Drs and Years later, frustration with diagnoses from "faking for attention" to "the vertigo meds SHOULD be working, keep trying what isn't working", and fed up with the whole quackery.
    And then while she was visiting from college, I saw another "spell", and saw the limb twitching that occurred during it, and the light bulb came on. I got her to a new neurologist.
    BINGO - petite mal seizures, 8 years and misdiagnosed by 5+ other ENT/Neuro's. Not until they progressed to medius mal seizures did the right idea start to take shape. 1st month of correct meds, 80% improvement, 6 months of fine-tuning dosage and schedule, 98% improvement.
    Same Lesson: if you're not feeling right and the Dr is not any help, get another Dr till you do find one that helps.

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     Post Posted: Tue Apr 10, 2018 8:01 am 
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    Kryton wrote:
    Same Lesson: if you're not feeling right and the Dr is not any help, get another Dr till you do find one that helps.


    Again very much this, I have tourettes syndrome but because I don't swear four different doctors told me my tics were stress until one sent me to a neurologist.

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     Post Posted: Tue Apr 10, 2018 10:17 am 
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    CandleInTheDark wrote:
    Kryton wrote:
    Same Lesson: if you're not feeling right and the Dr is not any help, get another Dr till you do find one that helps.


    Again very much this, I have tourettes syndrome but because I don't swear four different doctors told me my tics were stress until one sent me to a neurologist.


    I find that really interesting because in my recent medical school psychiatry class, we were taught that coprolalia was pretty much the least common presentation of Tourette Syndrome. The new generation learning from the older one's mistakes, I guess.

    I would definitely agree about getting a second or third opinion. Doctors can get stuck in the mindset of seeing 'normal' problems everyday that we can forget to listen and think critically when someone with an irregular presentation walks in.

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     Post Posted: Tue Apr 10, 2018 3:18 pm 
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    Linda Balder wrote:
    Spoiler: show
    I’ve had a digestive disorder as long as I can remember. But I never considered it a “disorder”. It was what I thought was normal.

    In my mid-twenties I started having episodes of severe upper abdominal pain that always started in the early morning hours. I’d go to bed feeling like I had indigestion then I’d wake up around 1:00 or 2:00 am with a horrible pain that was just below my sternum.

    As the pain increased it bore straight through to my back. I could not find any position of comfort. I couldn’t sit, stand, or lay down. Being on the bed was the worst. Sometimes I’d prop myself in the corner of the sofa with pillows behind my back, pillows under my knees to keep them bent, and another pillow between my chest and knees to apply pressure to the pain as that seemed to help, and gently rock myself back and forth to utter exhaustion until I fell asleep. This went on for hours.

    When I’d wake up, I would be tired and my abdomen would be sore and I wouldn’t be able to eat anything heavy if I ate anything at all. By the next day I’d still be leery about what to consume but for the most part things seemed to be back to normal.

    These episodes occurred infrequently at first. But eventually it started happening 2 - 3 times a year. I have no earthly clue why I never saw a doctor about it. I don’t recall even ever mentioning it. I don’t even think I was seeing a doctor on an annual basis yet. I think my train of thought was, I want to see the doctor when it’s happening so they can see what is going on as it’s happening. Going to the ER never once entered my mind. I grew up believing you only go to the ER when it’s “an emergency”. You know, blood and guts and broken bones. Or you know, a heart attack or something.

    When I was pregnant with Thor I had mentioned the problem to my OB and she said after the birth she’d do an ultrasound but she never did. And two weeks later we moved and I had all new doctors and promptly went back to my usual routine of ignoring things that shouldn’t have been ignored.

    When I turned 50 I had scheduled the obligatory colonoscopy but a recurring cyst on my left ovary took precedence and I ended up having my left ovary removed. That was a scary moment in time.

    I didn’t reschedule the colonoscopy until the following year and during that time I was experiencing what I assumed was severe acid reflux. So I asked to have an endoscopy done along with the colonoscopy. Nothing like having them go in from both ends. ;)

    In all honesty, there’s nothing to it. The concoction they give you the night before to flush your colon really isn’t that bad. Well, it definitely needs some sort of flavoring added to it in order to be able to consume it. I mean it seriously tastes like boop but the flushing of the colon was much easier and way faster than I anticipated. Once you’ve consumed all the liquid you’re done. Liquid in, liquid out. So don’t be hesitant about colonoscopy’s. They put you under and before you know it you’re awake and going home.

    The endoscopy revealed I had inflammation in my esophagus and a hiatal hernia among a few other things and from that point on I assumed whatever pain I had in my upper abdomen was hiatal hernia related.

    So here we are. I learned my lesson, a day late and a dollar short. When your body talks, listen to it. It’s telling you important things. Don’t ignore it. Also, don’t always trust your PCP. Trust your body and what it’s telling you. I told my PCP about the loss of appetite and the sudden weight loss. For the last two years that’s been a standard question that I always answered no to. This time I said yes and his response was: eat more.

    I have no doubt that I wanted to believe him more than I wanted to believe what my body was trying to tell me. Learn from my mistakes. You, and your loved ones, will be glad you did.

    <3


    Wow. Been through part of that journey. The 'good news' is that you eventually persisted and got a diagnosis. Tip of the hat for doing that and for not letting yourself become a statistic.

    I'm glad that you feel comfortable sharing your experiences here. Per my conversation with another Tool, you are not alone. I think that the other posters demonstrate, as do I, that many of us have been through our share of health issues. So, we're here and we get it. I am glad that you have turned us into the support group that you might need. I, for one, am glad to help.

    Thank again for including us. I look forward to the community paying you back for that faith in spades. [/pun]

    Be well,

    _________________
    “If the Truth can be Told, so as to be Understood, it WILL be Believed.” - T. McKenna

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     Post Posted: Tue Apr 10, 2018 4:49 pm 
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    Solidarity. I've gone through years of medical brushoffs and shrugs because whatever is wrong with me doesn't present in typical fashions, plus one especially terrible neurologist who told me I needed to see a psychologist because there was nothing physically wrong with me.

    I'm glad you have a diagnosis, even though it is a terrible one, and I wish for the best for you in recovering.

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     Post Posted: Wed Apr 11, 2018 4:38 am 
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    Well, that answers pretty much my question here http://forums.erfworld.com/viewtopic.php?f=35&t=14381&p=239876#p239876...
    Doctors seem to be made of the same material on both sides of the Atlantic ocean :D
    Most are pretty proud of their knowledge and do not easily share it with their patients.
    Some are :jetstone: , somes are :charlie: or (psychologically) :faq: but it really is a challenge to find some :think: ones, who take the whole picture into account, who see us as individuals (cases, but individuals still) and not meat pieces / schmucker sources and who really listen to our stories... Kind of was really lucky myself when my generalist sent me to a rheumatologist after a tick bite, that diagnosed a Lyme disease at first sight!
    Good for Linda (and for some others here) that YOU finally listen to your body, found some good doctors and get relieved / properly treated / listened to / taken care of...
    All my best hope and wishes to all (particularly chronical / long term) patients (including Linda)!

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     Post Posted: Wed Apr 11, 2018 6:24 am 
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    Coyoteiscrazy wrote:
    I look forward to the community paying you back for that faith in spades. [/pun]

    Be well,


    Syntax Error: unexpected tag "\[\/pun]" without preceding match: Exception thrown from java.lang.humor.parse.bone.funny.subtle.linda.laugh.hurts.reading.friends.{evoke} is deadlocked. Reversion to previous iteration not found, traceback temporal pathway is non-bidirectional. parameter count "feels" exceeds buffer capacity, recommend remedial pace of absorption as resources can accommodate.
    <3 <3 <3

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