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    Community Voices

    The fear in waiting.

    I just had an #Endocrinologist appointment that ended with bloodwork. Now I'm in that dreaded stage of waiting. I may have had every single symptom that checked the boxes for an endocrine problem, specifically #CushingsSyndrome , but you know... that's happened before. As someone who has spent their entire teen and current adult life suffering through doctors and their tests, most of them coming back negative, I'm used to this. But this time...I really need to have an answer. An answer with a solution, no more incurable diseases. If its Cushing's, which I hope it is, I'll just get the snip of a benign tumor and return to my typical homeostatic state of #EhlersDanlosSyndrome . I really just need some support during this time, and good vibes I have solid answers instead of "rule outs." #ChronicIllness #ChronicPain #Asthma #HypermobileTypeEDS #IrritableBowelSyndromeIBS #AcidReflux #GastroesophagealRefluxDisease #BellsPalsy #Tachycardia #CheckInWithMe #Undiagnosed

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    Community Voices

    Adrenal Glands? Hang in there!

    <p>Adrenal Glands? Hang in there!</p>
    3 people are talking about this
    Community Voices

    Tested for #MCAS, but derm said results are not “clear.” Have you been diagnosed with #MastCellActivationDisorder without conclusive results?

    I’ve been getting extremely bad/burning flushing since I was a kid and have had trouble with full body itching, dizziness, fainting etc. I was told by my primary it was stress, but decided to investigate with my dermatologist bc it occurs very randomly up to 3 times a day. After initial testing he decided to test me for #MastCellActivationDisorder, but the results didn’t come out “clear.” He referred me to an #Endocrinologist and said if I didn’t want to go that route he’d put on #Propranolol . Have you been diagnosed with mcas without conclusive results? Is an endocrinologist the way to go?

    3 people are talking about this
    Community Voices

    Any idea what to expect at a first appointment with a #Endocrinologist ?

    I’ve got a referral appointment tomorrow but no idea what to expect 😂

    4 people are talking about this
    Nick Coe
    Nick Coe @nick-coe

    Questions You Should Be Asking Your Endocrinologist

    Our family doctor is wonderful, and when we first suspected that my wife could have Addison’s disease, he referred us to an endocrinologist in town to run the blood work needed. We went through the process with this new stranger, and although he was able to tell us the diagnosis, his ability to relate and talk with my wife about the disease and what she could expect, was lacking. She certainly wasn’t looking for a magic bullet. She did, however, want to get some insight into the things she would experience as this new chapter of life unfolded for her. Instead of insight, all she heard was, “Take these steroids and you should be fine.” Unfortunately, for so many Addison’s patients, that’s just not the case. Symptoms are not the exact same for every Addison’s patient, and the disease cannot be managed with a one size fits all approach. In fact, many living with Addison’s are also diagnosed with other autoimmune disorders, further compounding the ability to manage symptoms and day to day well-being. For us, getting the proper advice and guidance from a doctor can be challenging, and that’s why we ask the following questions: 1. Have you had experience treating this type of condition? 2. What should I expect once I start treatment? 3. Are there potential complications that could arise during treatment? 4. If I have questions about my prescription dosing, are you available for a phone conversation? 5. What are other alternatives available to me? All of these questions are straightforward. How they answer will give you a better idea of what your relationship will look like in the future. Don’t be afraid to ask these questions early on in the process, and if you feel they are not treating you as an individual, find someone else! There is a great endocrinologist search tool for those of you located in the United States which can be found here. Are there any other questions you think should be asked? Leave your answer in the comments below. Follow this journey on Living With Addison’s. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: didesign021

    Getting Diagnosed With a Second Chronic Illness

    This past fall I felt sicker than I have ever been in my life. Fatigue covered my days like a heavy fog. Nausea haunted me, and I found myself vomiting a couple days a week for no good reason. I forced myself to go to class to see my therapy clients but otherwise spent the rest of my waking hours in bed. It was such a confusing season, largely because fatigue is a big part of my autoimmune disease, ankylosing spondylitis (AS). I’m used to debilitating fatigue, but this was worse. Oddly, my joints weren’t hurting, and usually my fatigue corresponds with intense joint pain. When I start to feel sick, my first thought is that I’m in a flare-up of my disease. It’s usually that simple. When something new hurts — like my eye — I figure AS can affect that, too. (Don’t worry, I see a doctor when odd pains crop up!) When that’s not the cause, I start thinking I’ve caught an infection or a virus because being on multiple immunosuppressant drug therapies definitely make me very susceptible to infections. But that wasn’t it. Katie Jo Ramsey, right, with her friend, Bess, who also writes for Anchor for the Soul. Days of nausea and fatigue turned to weeks. And then weeks turned to months. After every doctor visit and new medical test, I had no answers. In those months I began to feel sad. Really sad. A heaviness veiled my normally happy disposition. As a counselor, I knew I was experiencing symptoms of depression. But being sick with no answers is inherently depressing, so I figured that was why. My rheumatologist faithfully searched out the cause of my mystery illness and was determined to see me well. Both her instincts and mine told us this wasn’t AS and likely not rheumatologic. When the blood tests, CT scans and biopsies came back normal, she tested one more thing. “It’s a far-off chance that it’s this, and I’ve never seen it in my entire career, but let’s check it anyway,” she said. The day she called with my test results I was fully expecting to hear the results were, again, normal. The undiagnosed but very sick know normal test results are often the worst news to receive. Abnormal or positive test results mean answers, mean help and mean life can get better than the hell you are living. Almost no one understands why getting bad test results is such good news except the determined and courageous patients who haven’t given up on fighting for answers to the cause of their illnesses. But that day, I got the beginning of an answer. My doctor informed me that during my cosyntropin stimulation test my adrenal glands produced virtually no cortisol, which meant I had adrenal insufficiency (AI) . The onslaught of Google research commenced after I learned all the things I had been experiencing, including depression, were symptoms. I needed to start steroid therapy to replace the cortisol my body wasn’t able to make. Hydocortisone made my life immensely better in the span of about two weeks. But managing my new condition hasn’t been entirely stabilized, and we’re still determining the cause of my secondary adrenal insufficiency. Developing an additional condition has meant seeing more doctors (specifically, an endocrinologist), having even more regular blood work and sucking up the fact that I’m dependent on steroids daily to function. (Really, to live. Without steroids, adrenal insufficiency patients can go into life-threatening adrenal crisis.) Developing and managing a second disease requires bravery. “About 25 percent of autoimmune patients have a tendency to develop additional autoimmune diseases,” according to Maedica. And that diagnosis will bring new challenges and opportunities to process, grieve and hope for the better life we all want. Six months after finding out about my new condition, this is what I’ve learned: 1. Listen to your body. When we are attuned to our bodies, we often know when something is off physically. Trusting your internal sense that something is off can enable you to be persistent to get the care you need. 2. Value your health. The fear of not getting answers and being judged as a complainer or drug-seeker can keep us from pursuing medical care. If you are experiencing new, unexplainable and frustrating symptoms, value yourself enough to do the frustrating and scary work of seeing your doctor. 3. Let yourself grieve. Giving yourself the space to grieve your illnesses isn’t a pity party. Even though you’re used to being sick, it’s a blow to find out that one more thing is wrong with your body. Let yourself cry about it. Talk to a friend. Go back to see your counselor. (That’s what I did.) Whether you have one diagnosis, two or five, I hope you’ll be brave and value yourself today. Follow this journey on Anchor for the Soul. The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.