I want to begin this post by sharing a horrible dream I had last night. I was sitting in row G of a live outdoor show (my dreams are pretty specific sometimes), when someone behind me threw up all over my head. It was disgusting! I still remember the smell and feel of the vomit as it trickled down my face and hair. Ick! By the way, how do you “smell” things in a dream? I don’t know, but I sure did!
Ok, now that I got that off my chest, on to the main topic of this post. I am frustrated with doctors. Why? Because time and time again, I have had to fight to get testing that I feel is important, because many doctors tend to think I am just being a hypochondriac or overly anxious when I tell them I suspect a particular diagnosis.
However, time and time again, I have been proven RIGHT when I finally got the testing. C Diff, MRSA, medication allergies, asthma, CFS, fibromyalgia, costochondritis, pancreatitis, Aspergers, bipolar…all of these are conditions I highly suspected long before I actually got diagnosed, and yet, I had to fight to even get them checked out because doctors thought I was just being paranoid.
The most recent testing I am fighting for is Ehlers Danlos (EDS). I meet the major and most of the minor criteria for the condition, but have been fighting to even get a referral for testing. EDS is often comorbid with high-functioning autism, so that is what first made me interested in the condition. I am positive I score at least 6 or 7 out of 9 on the Beighton Score (higher on the Brighton Score).
I guess I can sum up this post in one sentence: Why is it so damn hard to get a simple test done???
Why😳
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Private providers and healthcare insurances seem the reasons why is so difficult to get a test done, if the test is required by the patient and it is not on the ” cheap-typical tests” list. Basically, if you live in a country with a private healthcare system, doctors are not their own bosses and they have to keep costs down for their office and for healthcare insurances. Thus, expensive tests and unique tests are a “no-no!”
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That may indeed be part of it, the whole thing just drives me nuts!
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I go through this with my son. “Doctors” and their schooling and x amount of years experience have yet to impress me over the simplest of things. I admit I don’t think very highly of them. I learn more from google..
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Exactly! I agree that I learn more from Google. Maybe it is the Aspie in me, but I do my research and I do it thoroughly, so oftentimes I end up feeling like I know more about certain conditions than they do!
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Lol! But we’re idiots because we didn’t pay untold amounts of dollars to go to a school that teaches a science and a theory….
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Keep at it! You’ll get there. I know it’s incredibly frustrating.
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Yeah, it is. I am a stubborn one though. I don’t give up easily.
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It took me about a year from when I first suspected until I was able to get tested. If by any chance one of your flexibilities is being able to put your legs behind your head, I find that makes a fairly dramatic point. 😉
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I can’t put my legs behind my head anymore. I can still easily get my feet up to my ears though. Don’t know if that would help lol. I can do the prayer position behind my back, turn my ankles at about a 90 degree angle to the side, and sit with my legs bent backwards to the side, which makes some other people cringe lol.
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You may have to whip out all those party tricks in your quest for testing. Being able to stack all your fingers on top of each other also creates that “eek” effect. Then never do any of that again after proper diagnosis. They all teach the EDS body that hyperextending is okay, and we have to learn through PT to stop that! 😉
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Is it normal to be able to touch your other fingers to your forearm? I can touch at least two or three of the other fingers to my forearm.
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I can do it, but I’m not the right person to ask what is normal! I know my doctor said even just being able to touch your toes to your ears is still unusual. 🙂
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This has been a go-to personal fidget of mine for years, but I’ve learned from diagnosis being able to do this is definitely hypermobile: https://i.pinimg.com/236x/e1/2d/10/e12d1057ab27e41f94e3b723961b08ad–chronic-illness-chronic-pain.jpg
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I don’t do exactly that, but I find it fun to put all my fingers in a straight vertical pile, one tip on top of the other. Don’t know if that is normal or not. According to the sites I’ve read about hypermobility, I still have a hypermobile pencil/pen grip. I don’t know how people write or draw with the way they say you are supposed to grip a writing implement!
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I know it isn’t good to do that stuff, because I often notice if I do, that I get achy and stiff afterwards. I always thought it was weird though that with all the pain, stiffness, muscle issues, and joint pain that I was still so flexible in many ways even though I didn’t exercise or stretch much at all anymore.
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On the beighton score I can do all, except it is painful to touch my right thumb to my forearm anymore (likely due to injuries and stiffness), so I typically don’t, and I can do the leaning over with palms on the floor thing, but do have to bend my knees slightly because my hamstrings have become so tight from years of severe plantar fasciitis. I could do it easily as a kid though.
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I hear ya! I basically had to diagnose and cure my own Candida problem of five years. I have a friend with EDS going through similar struggles.
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Thanks, it sucks lol.
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More power to you for continuing to push. Sadly those conditions such as Asbergers and Ehlers-Danlos Syndrome are among those that doctors just don’t seem prepared to even diagnose outside of childhood.And if they can, sometimes they don’t see the point of it. Speaking from personal experience. Wish we could move the whole field away from simply treating the symptoms.
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I agree entirely!
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I agree insurance , but it’s such a mess this insurance system.
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So annoying if that is the case 😦
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