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chronic-tea

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  1. Thanks so much for the welcome and information @MissMermaid ! I appreciate hearing your story of your second test. I probably can request another test if I come up negative, but it will be an uphill battle. Especially given that my current neurologists are pushing the "conversion disorder" diagnosis, which they say means that testing is "risky" (because it will further my belief that I have a medical rather than psychological illness 😒). I know I need new ones, but it will be easier to get a neurologist that is on board if it's positive. It'll just make life so much easier. Thanks, @Pistol ! You're exactly right that I'm putting too much emphasis on having a dramatic response. Because it's what I've been living with for so many months, part of me wants to "prove" it "when it counts." This is exacerbated by my experience of so many medical providers contradicting established medical fact (for example, my current neurologists' claim that small-fiber neuropathy is not associated with fatigue or brain fog) because they prefer to think I'm "hysterical." So I am also worried that medical providers might arbitrarily decide a mere 30 bpm increase isn't "really" POTS even if it's textbook POTS. I'm telling myself at least that this worry is a rational response to a system that has behaved so irrationally toward me. You're right too that moving is going to be essentially impossible for me to participate in if I change my care routine. I'm probably going to do it anyway. We planned our moving day around me being too impaired to help (since that's where I was at when we planned it), so we have what we need to manage that: a hired mover, friends who've agreed to help, etc. Even at my best, it's not like I was ever going to be able to carry boxes. It sucks to participate less than I wanted to, but having a better guarantee of test response that no one can "argue" with is worth it. (And the husband agrees with that too, which matters.) Respectfully, I know too much about Sjogren's to be reassured by a rheumatologist not finding it. To me, it's the same as a neurologist not thinking I have autonomic dysfunction- most of them are horribly undereducated about the condition, and it's also very difficult to diagnose because the biomarkers for it are so poor. About 30% of Sjogren's patients have negative autoimmune blood work. My ophthalmologist found I have almost no tear production and am not producing sufficient oils to prevent tear evaporation either. I cannot eat food without water, and it's difficult for me (to the point of being painful) to go a full hour without sipping water. Only drinking 68 oz per day (my "cut back") is difficult for me. Sometimes I can't sleep due to dry mouth. I have incredibly significant fatigue, even with POTS management. In addition to the "classic" dry eye/dry mouth presentation, Sjogren's is the second leading cause of autonomic dysfunction after diabetes and a leading cause of POTS. 50+% of all Sjogren's patients have dysautonomia. Furthermore, autoimmune conditions run in my family. When my father was diagnosed with rheumatoid arthritis 30+ years ago (around my current age), his blood work was negative also, but his clinical presentation was so strong his rheumatologist wanted to start him on treatment to see if he responded (with the understanding that, if he did, it would support the diagnosis). Not only did he respond, but his disease followed the expected course of RA, and you can now see his RA on x-rays, etc. Many, many patients like me have been difficult to diagnose but responded to Sjogren's treatment. Some patients have lived 3, 5, 7, or 10 years with the symptoms before the blood work or biopsies finally turn "positive" enough for a diagnosis- years that they've lost to disability, and during which they've acquired other organ involvement (lungs, kidney, lymphoma) that could have been delayed, avoided, or caught earlier (/believed in my medical providers) with treatment. I know that you didn't mean to imply that it wasn't, but it's worth noting: whatever is going on with me is terrible. I am about to turn 30 and I can't work. I'm not even well enough to pursue my hobbies full-time in the absence of work- or even to pursue my hobbies almost at all. I'm focused entirely on eating, bathing, food prep, going to doctors' appointments, and maintaining a relationship with my husband; that takes up my entire life, although with enough rest, sometimes I can go to a social event. I can't exercise; I used to love walking. I'm at risk for eye damage if I don't follow a strict, multi-step/multi-medication eye-care routine. I can no longer walk through an airport. I'm constantly seeing doctors, but aside from the eye stuff, I'm currently receiving no medical care or treatment. I know we can't choose our diseases, but I would be very grateful to have something terrible for which there are medical management strategies, rather than something terrible for which no one can offer me anything. That being said, I truly do appreciate your welcome and your input, and I will absolutely let you know how it goes!
  2. Hello all! New here. I am about to turn 30 years-old. I've been having a lot of symptoms that are familiar to many of you. These include exercise intolerance/post-exertional malaise, fatigue, brain fog and related cognitive dysfunctions, and paresthesias throughout my body (pricking, burning, pins and needles, "wet" sensation), and more. I had to quit my job this year and do not feel able to go back to work of any kind at this time, particularly because of the extreme fatigue and the brain fog. I recently had to fly, and I had to get a wheelchair at the airport to do so. I have a tilt table test next week (at Stanford with Dr. Jaradeh), and I am freaking out- not about the test itself, but about the fear that I won't test positive for POTS or other autonomic dysfunction that causes increased heart rate. In September and October- when I first started tracking my heart rate- I could reliably go up to and over 120 heart beats per minute when standing. I had to cook for myself (when I could) in a rolling office chair because I couldn't stand or walk around that much. During this time, I tested positive for POTS with a "poor man's" table test every,. single. time. Then (in late October) I discovered that if I drink 100 oz of liquids per day, I do much better, and can mostly maintain a heart rate in the low 100's or even the 90's, unless I do what is now for me "heavy" activity. I've been doing that daily, plus eating 3-5g of salt per day. This has also allowed me to increase my physical activity (also good for the POTS). The increase in physical activity is "small" for a typical person, but HUGE for me! And of course now, my POTS response is much less dramatic and reliable. I'm trying to pull back majorly on the liquids and salt starting now. I have no idea what to do about the physical activity- part of me wants to stop it until my test to increase my response (which is annoying because I enjoy it and it's good for me!), but my husband and I are also moving the day before the test. (It was either move the day before or the day after, and I chose before). I won't be hauling any boxes, but helping put things in boxes and removing them (which for me right now is "very physically active") would be great. An accurate POTS or other autonomic diagnosis is very important to me. Until I realized I had it and started treating it, it was hugely interfering with my life. (My symptoms still are interfering with my life, but it feels so significant that I've been able to do more things like take a walk or make a simple dish while standing!) If this test is negative because I've been treating POTS on my own, it's going to be so, so, so, so, so much harder to be evaluated for anything else autonomic. My neurologists already want to diagnose me with conversion disorder! They are refusing to test me for small-fiber neuropathy on the basis that "over-testing" has its own set of risks (like making me believe there is something really medically wrong with me 🙄- they also claim that small-fiber neuropathy would not help explain the fatigue or brain fog.) Stanford's autonomic clinic is waiting for these test results to rule on whether they will accept me as a patient (allowing me to be seen by a doctor who actually knows something about small-fiber neuropathy). I also believe that I have Sjogren's, which (I believe) is causing my autonomic dysfunction. My blood tests do not point towards a Sjogren's diagnosis (which as some of you may know, is not unusual). My first lip biopsy showed inflammation but not enough to diagnose Sjogren's- but also did not have enough material for a "full evaluation." I have a second lip biopsy scheduled for December with an expert in the procedure, but it seems relatively common that people develop neurological symptoms sometimes years before their lip biopsy shows up positive. In other words, I can't count on it showing up positive. Therefore, my entire "case" that I have Sjogren's is based on my clinically significant dry mouth/dry eyes + neurological symptoms. If I can't get a doctor to agree that I have neurological issues that are physiological rather than psychological, it's that much harder to persuade a rheumatologist to treat for probable Sjogren's based on clinical presentation. 😩 I'm trying to get my husband to go with me to the test. It's a hard day for him to miss work, but not an impossible one. There is so much riding on this test, it's just so so so so so scary that it could give a false negative.
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