Undiagnosed

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    Jill Alexandra

    In Defense of Just Ordering the Damn Tests

    Horses, not zebras. It’s an expression hammered into medical students that when you hear hoof beats (a patient’s symptoms) you should think horses (common conditions) not zebras (less common, more difficult to discover conditions). But how are they ever going to spot the zebras if they don’t even bother to look? Have you ever wished that your doctor would just order tests, if for no other reason than to rule out something? If so, you need to know these two words: differential diagnosis. It means making a diagnosis by ruling out the other things that could be causing the patient’s issues. Many conditions don’t have a specific test that “proves” they are the problem – but other conditions with similar symptoms can be ruled out with testing and evaluation, leaving the most likely culprit as the diagnosis. It’s a critical part of healthcare and diagnosis, but many doctors don’t put in the time and effort it takes to truly get to an answer – or at least as close as possible. When I was 20, I saw a doctor because I was increasingly having strong palpitations and the feeling that my heart was racing for no reason. He did a 30-second EKG, took one look at it, and said: “You’re fine. It’s just anxiety – go home and breathe in a paper bag like they do in the movies.” Yes, he actually said that. But I was young and I believed him – I was mortified that I had wasted this doctor’s time with my “mental problem.” I swore never to go to a doctor for a physical complaint ever again. Fast forward 10 years, and I had two grand-mal (tonic-clonic) seizures out of nowhere, with no history of them. I was on an antidepressant that had a small risk of seizures and, though I had been on it for years with no problem, I assumed that was the cause (because my mental illness is the sole cause of all my problems of course) – so my psychiatrist and I took me off that medication. But the seizures continued, and after two more I had to see a neurologist. She did an EEG, which will often show normal brain wave patterns unless someone is actively having a seizure, thus unsurprisingly came out normal, and she ordered an MRI which showed no tumors as a cause. She sent me on my way, feeling like they probably were just “spells” (passing out) – despite the fact I hit the ground so hard I broke teeth, got concussions, and had witnesses who said they were seizures. Again, I trusted the “professional” that they “probably won’t happen anymore.” When they happened two or three more times I returned to her, and she did the exact same tests, which of course were fine, and nothing more. At this point you would think my neurologist – not having found anything neurological – would at least recommend I see a cardiologist, as heart problems can cause loss of consciousness for various reasons. That’s not what she did. Instead, she chose to say the following: “Yeah, I think really it’s just your anxiety – if you learn to calm down, you’ll be fine.” She really said that, in all seriousness, to my face. Now, the rational part of me knew that was absurd, and when I later told it to my psychiatrist, he said, “Well, that’s clearly not right,” but the emotional part of me that wanted to trust and respect this trained professional just smiled and said “OK.” That was it – just “calm down.” Again, I was embarrassed I had “wasted a doctor’s time” with my histrionics. Luckily I have a great psychiatrist I can confide in, so I called him up and asked him “Am I being hypochondriacal to see a cardiologist just to be sure?” to which he replied, “Absolutely not, that’s the right move, I fully support that,” and he gave me a referral to the cardiologist who would radically change my life. I was going there to rule out any cardiac cause for my seizures – I wasn’t even going to mention the heart issues that had continued to plague me for the last 10 years, causing me to give up a lifetime of dancing, and interfering in my ability to function day to day. Come on — after I was told to breathe in a bag because it was just my anxiety, no way in hell I was going to endure that humiliation again. The cardiologist walked in, I told him about the seizures, and was fully prepared for the “all in your head” speech. But something funny happened – he kept talking to me. He kept getting to know me and asking me questions. Eventually, I had to confess I did have a little “cardiac encounter” 10 years before, but assured him it was just my anxiety… apparently. I told him I understood that anxiety can cause you to have palpitations and all that, but he wasn’t focused on my anxiety – he was focused on getting to the truth. And the truth was more than I ever expected. We talked about me, my life, and my medical history for half an hour. He never rushed me, never cut me off, and genuinely seemed engaged in getting to know and understand me. After he felt he had enough background, he listened to my heart, and immediately asked me, “Has anyone ever diagnosed you with mitral valve prolapse (MVP)?” – which I had never heard of, so of course, I said “no.” He seemed shocked, and rightfully so, as all it took was a simple “test” (listening to the patient’s heart with a stethoscope for 5 seconds) to discover that I had it. In 5 seconds he had already found something physically wrong with me – using the most basic medical training – that no one else had bothered to check. But finding I had MVP was just the beginning. He ordered multiple sets of lab work, an echocardiogram, and a follow-up appointment in two weeks when all the results would be back. The echo confirmed the MVP, but that wasn’t enough. It didn’t explain the things I had told him I felt regarding my heart — things I was brainwashed to believe were anxiety, and in fact tried to convince him were not worth bothering to worry about because it was “just my anxiety, I’m sure.” I assumed we were done – but he was just getting started. He wanted to see what my heart was up to day to day over time, so he put me on an event monitor. Like a tiny portable EKG, there were three wires stuck to my chest that I changed each night, connected to a small battery pack. I had a button I could push if something happened, including strong palpitation and racing heart, not just if I had a seizure, which triggered a marker, and the data wirelessly synced to his office. I wore the device for a month before returning for the follow-up. Again, I was fully prepared to hear that everything was fine. I was already embarrassed that he had me go through all this fancy extensive testing for nothing. So when he walked I took a deep breath… and then everything changed. Every time I thought I was having what are called PVCs (the sense of a ‘skipped beat’), it wasn’t in my head – it was truly happening on a constant basis, and he had the chart to show me. I couldn’t believe it, I wasn’t just being dramatic. Well, my disbelief was about to skyrocket. Offhand I said, “I wish that explained why it always feels like it’s going fast,” and without hesitation, he said, “That’s actually called inappropriate sinus tachycardia (IST), but there are medications we can give you to help treat it, and help you feel better.” I stared like a deer in headlights, completely in shock – and then I cried. The only thing I could think to say was, “So you mean I’m not ‘crazy?” And to his credit, he kept a straight face and said, “No, you’re not crazy at all,” and gave me a hug. It was real, it was all real the whole time – but no one had bothered to do enough testing and investigating to find out that I had an actual medical condition. No one wanted to work that hard. No one bothered to do more than the bare minimum of testing before taking the easy way out by blaming any and everything on my anxiety! He put me on medication and personally called after a week on it to check how I was doing. My panic attacks were almost non-existent, I fell asleep easier, and I could clean and garden and shop without feeling like I was having a heart attack. I was doing better than I knew I could be. All because he cared enough to keep looking, and not dismiss me as being “just mental.” He took the time to order the damn tests, and he took the time to keep going when one set of tests wasn’t enough. He couldn’t answer the question of why I had those seizures, but he could guarantee the reasons that were not causing them. He went so far as to arrange for me to have a three-year cardiac monitor implanted that would record my heart activity if I had another seizure. He walked me over to the scheduling department and told them to find a free spot ASAP. He was determined to rule out any cardiac cause, and literally went out of his way to make sure it happened. Less than a year after it was implanted, I had seven seizures in 16 hours and was admitted to the ER and neuro unit of the hospital. I remember him walking into my room, because I couldn’t believe he even knew I was there yet. I had only been there half a day, but he had already pulled up all the telemetry and spent a long time looking through it so that he could say with certainty that my heart wasn’t the cause – and personally came to tell me as soon as he could, so it would be one less thing for me to worry about. Without that implant, we still wouldn’t know for sure what my heart was doing during a seizure. But he did the damn tests. He did the damn work. He just freaking cared. So simple but so powerful. When a doctor cares, they don’t give up. They think, they try, they evaluate, they listen, they learn, and they don’t give up on you. Patients aren’t being dramatic, paranoid, or histrionic to want you to run tests to rule out possibilities – they are doing exactly what you should be doing; seeking the differential diagnoses by eliminating what can be eliminated — by testing and evaluating the results to narrow down the possibilities. Horses, not zebras doesn’t mean you don’t check. It means you don’t jump to conclusions. You run the obvious tests, and if those don’t give you answers, you keep checking – you don’t just stop after you hear the hoofbeats and decide it’s a horse. You check to be sure. If you aren’t willing to order the tests and put in the effort, you’ll have a zebra right in your face and never know it – because you didn’t bother to look.

    Community Voices

    Lonely but Living

    Hi everyone. I haven’t posted in ages, but need to and more often for sure! I’m dealing with alot of things, and sometimes feel to tired or in pain to reach out in RL to get the help I need. It’s frustrating to know the things that would help me (some of them anyway!) but not having the energy to do do them. I spend most of the time here at home, but finally have gotten to the libray for the first time in two years—so thats one good thing! But getting out for the other things is hard because I never know how I’m going to feel that day. I wish that we could call doctors and say “I really need to see someone right now-heres whats going on”. Often I end up waiting until someone can see me, and if its weeks or months in the future, that doesn’t help me very much. Sigh…
    Another thing is that going through everything from the bipolar depression to gastro problems to grief by myself is exhausting. In general I like living alone. But once my mental health stuff, physical health stuff, and grief collided, I was knocked on my butt and had no one to help me. Thank God for this site. It has been wonderful for me. Ive had support for the first time in years, and I’m so grateful for all of you guys.
    But I have to admit that I’d still love to have help in RL. Maybe I will one day. I have to believe that I will. Until then, I’m hanging in there and lonely, but living as best I can.
    Love to you all. ❤️

    #lonely #Bipolar2 #ADD #Undiagnosed #Stomach pain #chronic pain #CFS #Grief

    4 people are talking about this
    Community Voices
    R

    Prayers

    I haven’t exactly been active in this group, but I wanted to ask for prayers. I’m having another flare up and am really struggling with my faith.
    #POTS #Undiagnosed

    13 people are talking about this
    Community Voices

    Finally!!! Hydrotherapy and it starts tomorrow, yes!

    <p>Finally!!! Hydrotherapy and it starts tomorrow, yes!</p>
    8 people are talking about this
    Community Voices

    What’s one thing the today version of you can do for your tomorrow self?

    <p>What’s one thing the today version of you can do for your tomorrow self?</p>
    8 people are talking about this
    Community Voices

    I live with #ChronicPain that is presently #Undiagnosed . So far I have seen a rheumatologist who ran a lot of tests and sent me on to a neuromuscular doctor. I've only had 1 appointment so far with the neuromuscular doctor and he's doing an EMG in 2 weeks. My symptoms are pain all over my body, weakness in my legs, intense burning pain in my feet, shooting needle pain in my feet, legs, fingers, abdomen, and arms. Numbness and pain in both legs and arms. Muscle cramps in my legs and feet. Muscle spasms in my back. I was diagnosed with TMJ several years ago so my jaw sometimes aches. I also have gastrointestinal problems with bloated, stomach cramps, constipation, and diarrhea. And a new one is heartburn. I can't consume any dairy products or I get physically sick. I've been tested for lactose intolerance which came back negative and the Dr said I'm probably allergic to the dairy protein. Gluten gives me migraines but I've never been celiac tested. I can already here you saying fibromyalgia and yes that has been brought up. I was doing pretty good for about 2 months but in the last week a flare started and functioning is difficult. I am in counseling but he's making me feel invalidated so he's getting fired at my next session. I'll probably be leaning on everyone here more often. I also have #Anxiety and depression which I'm on lexipro for. I also see a psychiatrist.

    94 people are talking about this
    Community Voices

    I'm new here!

    Hello! My name is MJ. I am Mighty because I have chronic pain, fatigue, depression, and anxiety, but I keep trying anyways. I have a hodgepodge of symptoms including low muscle tone, frequent dislocations, frequent pneumonia, scoliosis, and osteoarthritis, but I can't help but feel like there is a condition or conditions that could explain why I face all these things. I wish I could get a diagnosis. Without one, I feel like I'm making something out of nothing. I want to know why I was able to go backpacking for 23 days but playing hacky sack for 30 minutes this week laid me out. I want there to be a reason for my struggles. #MightyTogether #Undiagnosed #Depression #Anxiety #ChronicPain

    16 people are talking about this
    Community Voices

    Severe Muscle Wasting/Atrophy in Legs-caused by Extreme Chronic Pain limiting mobility. #ChronicPain #ChronicIllness #MobilityAids #Undiagnosed

    I don’t recognize my body anymore. The extreme muscle loss in my legs have dramatically increased the pain in my legs. They continue to get worse and worse awaiting proper tests and diagnosis for the many neurological issues I’m struggling with.

    My mid-spine down is trying to paralyze me permanently and I fight it hard on the days that I can. I’m able to manage 15-20 mins max on my feet for any and all chores/exercises I push for on a giving day. I cannot do it at all without my walker. Many days I cannot do it at all. I push until I cannot endure 1 more minute of pain/burning and numbing in my spine/hips/butt/groin/legs/feet.

    I’M SCARED I’M GOING TO LOSE MY LEGS!

    I do have Degenerative Disc Disease and Fibromyalgia for well over 30 years. I also have Failed Back Surgery Syndrome from spine fusion and other spine surgeries, and what APPEARS to be extreme damage caused by surgical error of the wires inplanted in my spine stimulator and not found for 6 years.

    All of these past issues are delaying every single accurate diagnosis which keeps the doors closed-to proper treatments, medications, equipment, and assistance with the insurance company.

    How much longer can I wait? I’ve nothing left of my legs at all. I was a very active gardener my entire life. I never had a weight problem at all, didn’t have any excess body fat on my legs or anything, just muscle. I kept in good shape, fit!

    Now, I am struggling hard with my body shrinking to nothing because I cannot stand on my feet to cook proper meals and nutrition on any kind of regular basis.

    I’m wasting away!

    11 people are talking about this
    Community Voices
    Community Voices

    Where in your life do you feel most alone? Where do you feel most supported?

    <p>Where in your life do you feel most alone? Where do you feel most supported?</p>
    20 people are talking about this