Self dignosis

Personal spaces 👤 ND Crafters
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definitely don’t ignore the joints trust me on that, also just realized I apparently saved the post when you posted this comment not when you first posted the post :joy:

I am so happy to hear you got the official AudHD diagnosis, especially if you’re someone who is still in school having the option of discussing with your school about getting any form of IEP is semi helpful (definitely not as helpful as it’s supposed to be but take what you can get I guess) I know receiving an official diagnosis even after you’ve done all the research and every part of you is telling you this is it, that you also have something in the back of your mind that’s like what if I’m wrong? And that’s smart and shows humility and maturity (don’t get me wrong. I’m not saying you’re an adult. We just start to mature the minute we were born, and everybody goes at their own personal rate) by saying that sentence I mean, you acknowledge you aren’t the one who went to a butt ton of school to become a doctor and a specialist in the conditions, but you also don’t want to rely on only your knowledge, and because the state healthcare system is the way that it is, the people you were able to go to at the time didn’t include medical professionals meaning you couldn’t receive the diagnosis you needed or testing to see if that’s right, and I know when I was researching and really trying to understand if I had Autism, I had such a hard time, not having the official diagnosis because we couldn’t afford it because it didn’t matter how many medical articles I read and the research and everything something in the back of my mind was always what if I’m wrong until I got diagnosed, and receiving the diagnosis was (and yes to people who aren’t in the situation like this or who haven’t been in a situation like this this will sound weird) a relief, I finally felt seen, I started to understand a lot more about how I experienced things now and how I experienced things in the past and the way that I handled things and why.

PS: I’m AudHD too, (I unfortunately did not get diagnosed with autism until I was 19) because none of the doctors that my parents brought it up to would listen to them and actually give them referrals to professionals in the field, I got my official diagnosis of ADHD (we treated it with caffeine until then) when I was 11, but really we all knew I had it by the time I was 7, because my mom was late diagnosed when I was 5, so as she started to learn more about it she was able to see it, and one of the only reasons we got me assessed for an official diagnosis was because going to public school where I would need an IEP was being considered.

Fun, not so fun fact up until 2017 under the DSM criteria you could not be diagnosed with ADHD and autism. They only changed that in 2017 if I’m remembering correctly (if I’m remembering wrong and somebody is reading this feel free to correct me. I will take absolutely zero offense, and I will edit this to fix it because I don’t like spreading misinformation even by accident, I actually like being corrected when I’m wrong because if nobody tells me, how will I ever start doing it right), that meant that as soon as I got diagnosed with ADHD for a while nobody even if they wanted to, was able to diagnose me with Autism.

From here on, it’s more regarding physical medical that you also mentioned since you’ve got the AudHD done, if you’ve already got the Medical done too that’s great super happy for you and most of this information might be irrelevant and you could skip it all.

For me in my case I was able to receive free healthcare (yes in the US) because of my particular situation once I turned 18 there was a really long waitlist, but I got into a Indigent county healthcare program (it’s not super well-known but pretty much every state is supposed to have these programs like federally obligated) thing is depending on the state and depending on the county there’s varying rules, because there are some you absolutely have to provide these [insert federally legally required care here], and you can’t say someone’s not eligible because of this [insert specific reason here], and then they have the rules that they’re like it’d be nice if you can provide that but their optional and here is the most ridiculous optional care [physical therapy; ie: we will pay for your surgery, but we are not obligated to pay for your healing after the surgery so you’re just gonna wind up in the hospital again if you don’t have the provisions to get physical therapy or to give yourself physical therapy and hope you’re doing it right, but something’s better than nothing]. In order to qualify for these programs throughout the states, you have to meet certain Financial requirements and when you aren’t legally an adult, unfortunately your legal guardians Financial state counts against you, but most of the programs when you are legally, an adult count you as your own household, even if you are living under someone else’s roof, even if that’s someone is your mom and/or dad, (just always when filling out an application for a program like this call the office that reviewed your application and confirm what they define as a household, don’t give them a reason to count your legal guardians finance against you, let them do the talking, I think I summed mined up when I called them to confirm, I count in my household appropriately with something along the lines of “so they only count as part of my household if they are a minor under my care, a spouse, ect… right? So I don’t need to count roommates or friends who are letting me stay with them?” I also had them clarify in direct words for my situation, and recorded it (in case I need proof later) that my finances were the only ones that mattered in my situation.

On my first appointment with my Primary Care after applying for that program and getting in, I came with tabbed file folders of the conditions that I thought I might have and highlighted with notes why and what symptoms so that they could take a look at it and go well I can see where you started to think that, but we also have a much more common condition that covers a lot of of this that I’d like to check for first, and walked in saying look I know I’m not a doctor, but I also haven’t seen a doctor since I was 14 and I was only for ER visits, but I didn’t go to school for the stuff, you did, so I figured if I highlighted the symptoms and wrote down my notes, you could look at it, and we can start with the more common things that may cause this if there are some, but you at least have my symptoms and my notes and what led me down this path, so long as you talk to me and communicate why we’re going a different way first that’s fine (now I did not say all of this out loud I kind of mostly summed it up with I didn’t go to school to be a doctor you did but I live in my body and I know it the most right now and now you know, the things that are standing out to me right now and why there’s something like that ), so because it was my first visit with my Primary Care and I was among his first patient too in the Primary Care specialty, we focused on one thing (not the one I would’ve chosen, but it all worked out, and my main thing for the first visit was setting a good impression, but at the same time making it clear I know what I’m talking about and I’m not gonna be a pushover, so I don’t even try gaslighting me), so the first thing that got checked and focused on with fatigue (like I said not the thing I would’ve chosen to focus on first because it was by far not the biggest issue, but it was my first appointment) ran a vitamin D panel (which I was already straightforward. I had family history severe deficiency and was pretty sure I was deficient, but that it wasn’t the problem and I was right) your basic CBC considering I hadn’t been to a doctor in years, and then of course my iron, and the attending that day came in and had me do a very short, very annoying for me and my personal autistic experience, daytime sleepiness test, and I got referred to a pulmonologist to check and make sure I didn’t have sleep apnea or narcolepsy, after that I pulled out in my case, one of my “power cards” and brought my dad to my next appointment, my dad and I will frequently talk ahead of time before a doctors appointment if he’s going with me so that we’re on the same page (partly because with my help now sometimes I can’t speak during the entire appointment and not in an autism way, but due to my other physical medical conditions) so we were to be on the same page that way if I’m unable to speak at all or I’m only able to speak here and there my dad still knows what I wanted to communicated and he will do that, but when I first went, our main concern was my heart (it was indeed the POTS​:joy:) because I knew being female and young I had an incredibly high risk of being dismissed by the doctor as my tachycardia being just because of anxiety, so instead of me bringing it up, I know it would be more effective if my dad did, and I had months of Apple Watch heart rate and EKG monitoring that I printed out and gave the doctor, that way I had health monitor (I say Health and not Medical because I’m not entirely sure where the Apple Watch falls in this instance) and because I had the proof right there of long-term issues, immediately the doctors were happy to listen to a concerned father go some things wrong with my daughter’s heart and I’m concerned what are we gonna do? And I walked out with a referral to a cardiologist, basically you work the system, and stand your ground, but always keep in mind you didn’t go to school to be a doctor, so be open to being wrong, but you live in your body you are the expert on how it feels (depending on where you are for interoception and proprioception areas), and the best way to cater to a doctor without letting them walk all over you is to boost their ego just a tiny bit by acknowledging they went to school for it and you didn’t, but not too much because you’ve lived in your body, your entire life and after 2 1/2 years, you are considered an expert in that field, because you don’t only exist in your body 9 to 5 ordering business days so instead of 10 years some person on TikTok to the math and it takes 2 1/2, I don’t remember for sure if that was before or after he took away the time you spend sleeping cause I think he also did that calculation too, so you boost the ego just a little bit, and you bring medically, credited articles, and highlight your symptoms, Add notes, basically print out the research articles and make them your diary for your health, and bring a copy to your appointment that way if they keep it, you still have the original at home and you can make another because they don’t always read it after taking it, and then they can look at your printed out research articles from medically accredited sites with your notes on your symptoms and your experience, and with that info, they can send you to the places to look for horses first even if later on you wind up with zebras and unicorns and Pegasus and alicorns winding up being the answers

(to answer a possible question if anybody got this far down based off of the fact you got this far down you’re probably already familiar with the zebra term either because you have EDS or because you’re familiar with the “Look for horses, not zebras” phrase, used before, I added the unicorn/Pegasus, and Alicorn parts from my and my families personal experiences, we tried to look for horses all we found were a lot of zebras, and then we went to some good doctors and got diagnosed with rare comorbidities that are considered extremely rare even among the comorbidities, and depending on how rare I started using, not just zebra, but my own little twist of adding in the other three, because the doctors keep seeming to find the other three

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Oh, and so you don’t have to read the really long reply post if you choose not to, I say trust me, and don’t ignore the joints in a way meaning to balance it as best you can because if you have a connective tissue disorder, but things like crochet and stuff that can make those things worse help you get through the day, maybe give you some serotonin and dopamine and that’s sort of stuff. It’s a balancing act. Try not to speed up the connective tissue issue too much but the therapy that these things provide to your brain are also beneficial. It’s like all the medication say “you have been prescribed this because your doctor has determined the benefits of this medication outweigh the risks” {proceeds to list way too many risks and really fine print} <~~ also just realized that sort of seems like I don’t believe in medication the way that I worded it, I did not mean for the wording come across that way. I am on plenty of medication, I just really hate reading the fine print, but I do it anyway, because I tend to need to have that information a lot

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thats a lot of writing. Ill read it when i get home tysm :white_heart:

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I want to say I am also self-diagnosed AuDHD, and it’s tough because it does feel awkward especially with autism one of the hallmarks is strong adherence to rules. So it feels wrong because no official source has told us we have it. But the medical system has failed us and if you look into it self diagnosis is extremely reliable, don’t remember the exact statistic but it was somewhere around 90% accuracy. We’re getting closer to the day where we’ll be able to get a quick answer from a brain scan and genetic test, but for now it’s safe to say if you feel different and your symptoms align it’s most likely a reliable diagnosis for you and it makes sense to use that label if it fits, especially if it helps you make sense of your health issues and potentially learn how to work through them because knowledge is power. It sounds like you have POTS worse than me and I just last month had a doctor tell me I might not have it even though I have a family history of it and already have been diagnosed by another doctor. You know yourself better than anyone!!! Pain is telling you something is wrong. I had chronic pain for years and numerous doctors told me nothing was wrong. Turns out I have lipedema and arthritis. There’s a lymph node there that doesn’t drain so it gets inflamed and triggers the arthritis. Years of NSAIDs and now I can handle it with self-massage and mindful movement like rebounding. Listen to yourself and learn what may or may not be helpful for you as an individual. Good luck on your journey, you’re strong and you got this.

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So I wanted to just mention (not at all saying I agree with one doctor over the other treating you because I don’t know your case, history, age [fyi do not tell me your age or any of the previous things I mentioneds info, to be clear I am not asking for it by stating I don’t know it] and I’m not a doctor so even if I knew all those details I still wouldn’t be able to say which one is right) but not everyone gets told this info but if you developed POTS at a young age particularly before you hit late teens, you can grow out of it, don’t get me wrong, POTS doesn’t have a cure or a fix right now just things to help you manage, but because your body is still growing particularly before you hit late teens, the changes that happen sometimes (and according to a doctor from 2013, so their information access would not be from anything 2014-present time) The available knowledge about POTS was that the majority of kids who developed it before their late teens wound up, not having it in their late teens i.e. growing out of it sort of, but also literally, and the conclusion that I remember was that they concluded the kids grew out of it around the time you kind of stopped growing because when they first developed it, they were young enough that their veins and everything still had a lot of growing to do, so it’s still not a cure and it’s not the case for everyone (it certainly wasn’t for me, but I had it for a long time before anybody told us about it. I had it for a long time before my parents even knew because I was so young) I did not grow out of it, and since Covid and more people developing POTS after having Covid they found that a lot of of them were genetically predisposed to developing POTS anyway Covid just kinda sped up the process, because before Covid even was a thing POTS had been around for a while, they found most people who developed it to the degree, that it affected their quality of life, had it exacerbated by a previous virus, and they theorized (the article. I’m mentioning that theorized this was multiple years before Covid, so Research has progressed since this article keep that in mind) that in people genetically predisposed, possibly even had it way back at the beginning of their lives, but not in a way that it affected their lives or in a way that they noticed, rather it was in more minor ways like over salting food, needing more water than most people, ect….. just little things that don’t seem like much until you get the flu (or Covid, or another coronavirus) and then suddenly the minor things aren’t minor anymore, suddenly a six-year-old‘s legs are turning purple because they were outside playing with their siblings for a little bit, and they constantly need to hang their head off of furniture and don’t understand why everybody else has to get up because it hurts them at a point and they see phosphines because it’s too much blood in their brain, whereas the POTS kid is starting to be able to possibly think more clearly see better and just feel a little bit better opposite the peers meanwhile by hanging your head off the furniture without even knowing you have the condition you are inadvertently treating it, but they found that the with genetically predisposed people the more severe case of coronavirus (cause that is a category and the flu is one of them) the predisposed person had the more likely they were to develop and or make worse their POTS.

So what I’m trying to say is kind of one if you first developed it younger it is possible that you don’t have it, however, there’s also orthostatic intolerance, frequently in case cases where the POTS seems to have improved a bit to the point where you don’t quite hit the full number that you need to to get your diagnosis you may wind up with a diagnosis of orthostatic intolerance (and that can be as a result of temporary improvement, &/or as a result of continued improvement) but it also means for the physicians that they need to still keep an eye on it because anytime you get a virus you could go back from your improvement to orthostatic intolerance to fall on possibly worse than before POTS all over again.

I know a lot about it because I was that six-year-old that’s when I got it. I got the flu. I had a fever of 105° I had to go to the hospital as a whole thing, but being that young, I wasn’t alarmed when my legs turned purple. I just decided to lie down on the couch and put my feet up on the arm rest for a little bit and then my leg coloring went back to normal and. My little kid, six-year-old logic said cool color changing legs, and thought that was nothing to worry about and didn’t need to mention it to my parents because I just thought it was cool thing like the hypermobility party tricks and tell you start dislocating things. When my parents noticed, I was 10 almost 11 and my mom was terrified (cause there’s not a whole lot of things that make your legs turn purple up to your mid thigh, and a lot of of the reasons result in loss of limb and or severe surgery), my dad was calm, but also very worried for the same reason, but he realized how calm I was as I began to tell them it was completely normal for that to happen and that if I put my feet up, for a little bit and lie down on the couch they’d stop being purple, my dad had to calmly tell me to stop washing dishes and to go lay down on the couch and put my feet up so that they could see and we could also put my mom at ease, so I did and they did stop being purple after a while rest, after my legs returned to my normal color I tried to get up and finish the dishes. My concerned parents did not let me instead gave me control of the TV remote and encouraged me to watch TV and rest more and then set an appointment with the family doctor and at that appointment was the first time we had ever really heard about the condition, but because I was adolescent, I wasn’t even early teens at the time you didn’t wanna diagnose me because I didn’t need the “ label” unfortunately that also meant throughout my childhood I still had this condition, but no doctor ever treated it partly because we moved so the one doctor who was pretty sure I had it, but chose not to give me the “ label” because I would probably be fine and grow out of it, I think that not receiving treatment just because you’re young and there’s a possibility you could grow out of it, I think when they decide to take that course without running more tests or consulting, forget an expert in POTS but even just consulting a cardiologist, you run into a lot more people who aren’t growing out of it as they get older because nobody was keeping an eye on it except for the patient (and in some cases, the patient’s family) so it’s missed and left untreated as it gets worse every time you get sick, I think those cases have a large impact on whether or not you’re able to heal while you’re literally still growing as a child, and if you’re able to heal fast enough to keep up with the damage of getting sick more often than the most, because there’s no physician checking in on the situation you run into an entire category of people who are never going to heal as they grow because they aren’t receiving any help.

Ps: also just wanted to mention at the end of this because I don’t think I really said it in my other posts, I am as is the majority of the neurodivergent community pro self identifying with Something when you have done your research from credible sources and you don’t have access to go see a doctor and get evaluated but you would go if you could, but most importantly, you did your research from credible sources and so much of you in your brain is like I think I finally understand why I don’t understand, self identifying Can quite literally save a person’s life, I think from what I’ve noticed in the neurodivergent community from both officially diagnosed and not the only concern really is that you did your research and you did it from credible sources, and not just some random Facebook quiz, which is usually the case in people who self identify with a diagnosis. For goodness sakes, I spent three years self identifying as I think I might have OCD, but I’m not sure (turns out I had been diagnosed for those whole three years already) they evaluated it during my autism assessment, I missed it on the paperwork for three years, and I read that paperwork so much because all those self identifying can make a load of difference for someone, especially in cases of those of us with Autism receiving the diagnosis from the medical professional is extremely validating, so I read the thing the first year like once a month minimum I still pick up the paperwork and read it from time to time because I spent so long without the diagnosis not understanding, but I didn’t qualify for any of the Healthcare or things that I would need to go get a evaluated when I really started looking into it until after I turned 18 and was legally considered an adult in the US, and I had already kind of known I was autistic since I was a really little kid, but I didn’t know or understand any of what that label meant and I didn’t really have access to research it further to figure that out until I was older, and it wasn’t until I was 17 I started really full on deep dive researching Autism, but my MDD had gotten so bad from spending so long masking my mom was scared but how bad my MDD had gotten from the burden of masking, for me self-identifying untilI was able to have access to the opportunity to be assessed by a professional literally saved my life, if I hadn’t self-identified and started to unmask even if I only felt comfortable doing that at home, letting myself bring back a lot of of those things (mostly movement Stims) and not feel like I had to hide it anymore, and to have the words to express my lack of expression or understanding of a situation that’s to somebody else seems completely obvious, and to be able to communicate better with my parents, while waiting to seize the opportunity when became available to be seen by a professional, it saved my life literally because masking was just taking such a huge toll.

Also, sorry for another long message my ADHD medicine as long since worn off so I rambled because I’m using voice to text :joy::sweat_smile::melting_face:

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