#doctors tw

[andillwriteyouatragedy]

third doctor in a week today 🙏 manifest for me that this will be the one to help me !

[herigo]

화이팅!!!

[flutterbyfairy]

i have a neurologist appointment in about a month that i'm quite nervous about due to previously being dismissed/not having my concerns listened to, so gonna post this to ask for some advice on getting Taken Seriously or if anyone knows things about the type of condition i might have about what i should be asking them to do/test.

might be quite long so putting it under a read more, and tw for medical stuff and doctors being dismissive. also i am So So Tired and therefore not able to think very clearly so apologies if i've messed up any of the medical info about conditions i mention and apologise just generally for the rambliness of my writing.

summary of why i'm going:

bunch of disabling symptoms that have continually progressed over the past 5+ years, including: muscle weakness, fatigue, muscle twitches/small spasms, nerve pain, blurry vision, lack of coordination (have this from autism, however has gotten significantly worse recently so might also be related to neuro stuff). first symptoms were difficulty having my arms over my head (like having to take multiple breaks while putting my hair into a ponytail because i couldn't hold my arms over my head for the like.. three minutes to do a ponytail) and blurry vision (that optometrist has said seems like might be due to a systemic disease because of how variable it is) since i was 13, which was seven years ago. i started getting more impairing symptoms when i was 15, and began needing a wheelchair for anything that required standing or walking for more than 10 - 15 minutes. i'm currently 20 and need my wheelchair whenever i leave the house, i can't leave the house or do things around the house often, i can stand for a max of like four minutes and can't hold my hands above my head for more than like 30 seconds to one minute. pretty much all my symptoms get a lot worse with any exertion.

GP thinks i have myasthenia gravis, but the test for acetylcholine receptor antibodies was negative and he doesn't have the ability to do other tests.

the neurologist has already said he thinks i have functional neurological disorder and that i should do CBT and pysio to improve my functioning (i already know CBT is horrible for me, i'm in other therapy which is good, i've done some psyio before but she just taught me some stretches and that was it, more psyio could be good but it'd have to be with someone who isn't trying to do a graded exercise therapy type thing since i get PEM). he has mentioned doing a spine MRI but this hasn't been done yet. he said he doesn't want to do further testing for myasthenia gravis but i will probably try to get him to agree to doing a repetitive nerve stimulation EMG or something.

i also have scapular winging on the side of my body with worse muscular symptoms which has also caused a lot of nerve pain, and i might also have some sort of spine issues (straightening of cervical lordosis was seen on a CT scan, they said it was probably due to muscle spasms, and i get a lot of neck pain which might be due to that? as well as a ton of back pain along my spine. might have CCI but haven't been tested yet). since it seems like i'm getting some structural changes in areas where i also get a lot of the pain and weakness and spasms i'm hoping if i bring that up the neurologist might maybe look more at organic causes + the state of those structural changes but i dunno.

he did a basic neurological exam in my initial appointment with him and said that i have give way weakness/waxing and waning weakness because when he got me to do the pushing my limbs against resistance i could do okay for a couple seconds but couldn't maintain it. he also said in the letter that i had positive hoovers sign however i am.. very confused by this because from my understanding hoovers sign is mainly looked at when someone has one limb that's at least somewhat "normal" and one that either can't be moved or is very weak, and then the person can't move the weak leg but when asked to push the stronger leg against resistance they push the weak leg down. both my legs are strong enough that i can stand and whilst one leg is a bit weaker they're relatively similar. i lifted and pushed against resistance with both legs so.... i am not sure how hoovers is applicable here? does anyone know why it was applied and if that was correct or if i should be challenging that? he's saying that the give way weakness and positive hoovers are indicators that the problem is "non-organic" and therefore should be treated with CBT and pysio.

i'm not sure what i think is actually going on. i think myasthenia gravis might make sense, but also so could other neuromuscular diseases like a mitochondrial disease or something. also very possible it's myalgic encephalomyelitis (aka chronic fatigue syndrome) but obviously that one is a diagnosis of exclusion so i want to rule other things out if possible. i want to know what's going on so i can have the best chance of being as well as is possible for me. i know CBT is not right for me and whilst some type of pysio could help a bit/prevent some decline (based on past experience i know it won't Cure Me but obviously it can help a bit to build some muscle or maintain range of motion and things like that which are important) if there's other things i can do on top of that i want to.

i've tried to do research to work out the best tests to ask for and i think EMG might be good but also know a normal EMG doesn't typically pick up myasthenia gravis so it needs to also have repetitive nerve stimulation i think?

i can't see a different neurologist at least not anytime soon, so i need to get this neurologist to do as much to help as possible. a social worker from where i get therapy is coming to the appointment to help me so that should be good but i need to work out what the best way to advocate for myself is and what tests are going to be the most useful to ask for.

if anyone has any advice for getting doctors to take you seriously or for any tests i should be advocating for or conditions i should be looking into or anything i would really appreciate it <3 (emoticon description: heart)

[lost-amongst-the-stars]

I just finished a telehealth appointment with my neurologist that started nearly an hour after it was scheduled. But he's good enough that, despite this being the norm and having to expect to spend about half an hour waiting on hold anytime I call, I have no intention to switch doctors. Plus, it seems this is the norm with most doctors now.

[fortitudina]

*OOC. ------ My gynaecologist is an absolute piece of shit, I swear! I just got a letter through with him stating that he looked at the results of my ultrasound and despite my right ovary being fused to my uterus, I cannot POSSIBLY have any active endometriosis, it'll all be old endometriosis. His reasoning as to why I possibly cannot have any active endo? because I have the mirena coil fitted. What a crock of shit! I absolutely hate how lacking of knowledge on endometriosis most doctors are.

[paradoxesofgalaxies]

It's so frustrating to find care as a trans person. I live in a blue state that's considered pretty progressive, but trying to find doctors who will work with trans patients is a nightmare.

Places that operate from an informed consent model are so booked out they don't even have waiting lists. I finally found a doctor who prescribes HRT and had openings after nearly a year of searching. And while I like my doctor, his office is incredibly incompetent. They cancel appointments without warning. Getting any kind of paperwork done feels like a Sisyphean effort. Trying to get refills on my meds takes multiple phone calls and several days. I have a lot of patience for incompetent medical offices after all my years of chronic illness, but this office is so difficult to deal with that I would normally be trying to find care elsewhere. But where else would I go? There aren't other doctors in my area that take trans patients and have openings.

Even still, I feel lucky to have care at all. I know so many of my trans siblings are in states where the situation is much, much worse. At least I have access to hormones. At least I have some medical care.

But it's still pretty fucked that because I am trans I am far more limited in what care is available to me than my cis partners. They have the option to seek care elsewhere, options that just aren't available to me.

Yet it feels wrong to complain about this when situations are so rapidly becoming dire in other parts of the country. States banning trans healthcare. States banning us from bathrooms. Florida expanding the use of the death penalty in an obvious move to go after trans people and those who provide care for us. It's horrific. It's too much for words.

I don't know where I'm going with this at this point. But shit's fucked and it's terrifying to watch this all happen and feel powerless to stop it.

[unfilteredrealities]

TW ED , Weight Talk , Fatphobia , Medical, Doctors, Ableism

So the appointment went uh questionable.

Doctor told me I’m a difficult patient to consult bcs I am “morbidly obese” and that I need to lose weight. Oh and she said for a 26yo I should be healthy and it’s not possible that I have something wrong most likely.

LIKE BITCH! You can have issues at any age???? Like some toddlers have issues since they are little and no one tells them “oh you are too young to already suffer by xyz” so why tell me I can’t possibly be having all these issues with 26???

I tried to stand up and told her that my lower leg is not fat at all that it is lean and its muscles and that my upper thigh is chunky.

She then shut up and stuck a needle into my leg into my nerve and did her thing.

She didn’t even let me know “hey I’ll stick a needle now into your leg so be prepared”

So yeah. 111$ gone for this procedure bcs this EMG isn’t included in the healthcare system gg

My eating disorder is now super triggered and it’s telling me to restrict and not eat and it only once a day which is rationally speaking bullshit and unhealthy.

You know what? I will eat right now something. Even if I had for lunch Pizza. I will still eat dinner. Fuck you eating disorder!

[muddlemore]

SURVIVED THE CHECKUP RAHHHHHH

[mogaihaze]

Feargender A gender influenced or overwhelmed by fear. A gender that is overly fearful and afraid.

[Image ID: A five horizontally striped pride flag. From top to bottom the stripes are coloured dark red, red, lilac, blue, dark blue. / End ID]

Bloodfearic A gender influenced or overwhelmed by fear of blood. A gender that is overly fearful and afraid of blood.

[Image ID: A six horizontally striped pride flag. From top to bottom the stripes are coloured dark red, red, lilac, red, a darker red, and then a brighter red. / End ID]

Bloodworkfearic A gender influenced or overwhelmed by fear of blood work and getting blood work done. A gender that is overly fearful and afraid of blood work.

[Image ID: A six horizontally striped pride flag. From top to bottom the stripes are coloured dark red, red, lilac, white, light red, and then a darker red. / End ID]

Bugfearic A gender influenced or overwhelmed by fear of bugs. A gender that is overly fearful and afraid of bugs.

[Image ID: A six horizontally striped pride flag. From top to bottom the stripes are coloured dark red, red, lilac, dark beige, brown, and very dark grey. / End ID]

Docfearic A gender influenced or overwhelmed by fear of doctors. A gender that is overly fearful and afraid of doctors.

[Image ID: A six horizontally striped pride flag. From top to bottom the stripes are coloured dark red, red, lilac, white, grey, and then silver. / End ID]

Peoplefearic A gender influenced or overwhelmed by fear of people. A gender that is overly fearful and afraid of people.

[Image ID: A six horizontally striped pride flag. From top to bottom the stripes are coloured dark red, red, lilac, teal, blue, then dark blue. / End ID]

[wyrdify]

This is not at anyone here. This is at the U.S. healthcare system, particularly as it relates to neurodivergent trans people. Rant below the cut.

So, back in April, I asked my med manager for a referral to get evaluated for autism. Said med manager does not do it herself since she doesn't do diagnoses, and neither does the facility she works at, so she referred me out. I was then told that the place will be in touch with me to get me scheduled, and this may take up to 6-12 months as they have a waiting list. But, I can check on that referral at any time by calling them. Cool.

More background information: I started taking Effexor more than a month ago (probably close to two months now) since Zoloft, my old anti-depressant, wasn't really working. I noticed that, on the 75 mg dose of Effexor, I sometimes experienced brain fog, muscle weakness, and other things I associated with my seizures. Effexor worked, but I felt it was also lowering my seizure threshold. Med manager, who prescribed the Effexor, told me to contact my neurologist about it since my neurologist handles my epilepsy. Fine. No problem. That usually isn't an issue.

I couldn't reach my neurologist. I called her office at least twice and had her medical assistant call me back, who promised me my neurologist would call me back. That never happened. So, I tried another method, which was MyChart. I sent a message to my neurologist there on July 6, and I never heard back. Nothing. I don't see her until the end of November, so now I need to try and basically move up my appointment just to get a basic question about a prescription answered. I schedule my appointments with her a year in advance, so I don't know how much luck I'll have there.

So, that's one fail of the U.S. Healthcare system. Let's move on to what happened yesterday and today.

Yesterday, I meet with my med manager to go over a few things. I bring a list with me because not only has it been about a month since I last saw her, but I wanted to get the ball rolling on a couple other things. I wanted to see if an evaluation for ADHD was separate from the one I was getting for autism, and I wanted to get a referral letter for top surgery. For those who've known me for a while, you've known I've lived with gender dysphoria since 2016-17. It's been a long time. I want to get that started now and not keep waiting around.

What she ended up telling me: an ADHD eval is part of the autism one I'm going to have since it's a full neuropsych eval. Okay, that makes sense. Cool. I move on to the next subject: top surgery. She tells me to go to a place in the city to talk to them about surgery. They don't do anything with top surgery. Yes, they do gender affirming healthcare, but I was specifically asking for a referral letter. I looked into what I needed for top surgery in my state before this appointment (not directly before, but days before). I need at least one letter from a mental health provider for it. Why did my med manager refer me to somewhere that doesn't do that and will likely just tell me to go back to her?

She said that she or my therapist, who works in the same facility, could write the letter, but still. STILL. She sent me to another place first. I am a trans person who doesn't need hormone therapy. I need top surgery. My gender dysphoria is well documented in their system. I checked. It became abundantly clear to me in that moment that she doesn't have many trans patients. At all. That facility in general probably doesn't considering the last med manager I had there was transphobic. Anyway.

Today: I called this morning to check on the status of my referral for the neuropsych eval. It turns out that they couldn't accept my referral because they don't have a specialist, so they sent it back for my PCP to handle (same facility as my med manager and my therapist). My med manager didn't see this at all. I'm not even sure she was looking at my chart to be honest. If she did, maybe she would've saw this and said, "Oh, I need to refer you to somewhere else or have your PCP do it." But no, I get to be back at square fucking one again. Because I couldn't ask my med manager to get that referral for a neuropsych exam. I had to go through my PCP to do it. Make it make sense.

I am so goddamn frustrated with this system. I'm just trying to take care of my health and be somewhat proactive about it, but I fucking can't. At this point, I don't know what to do. I might leave this facility all together and start over with a new PCP, new therapist, and new med manager. But, then I run the risk of not being in therapy for months, not seeing a med manager for months to a year, and not seeing a PCP for months to a year as well. And I'm in the middle of a med change too. Not only that, but I don't want to be a difficult patient or someone who just quits doctors or places willy-nilly. This is my third med manager, fourth therapist, and fourth PCP since I moved here nearly 10 years ago.

I don't know what to do. What the hell do I do? I want to cry, scream, rage. I hate this healthcare system so much.

[freakthing]

Hey yall, I might be gone for just a moment. I found out the side effects I've been experiencing from this medication are in fact symptoms of one serious bad side effect. For nearly two weeks the ammonia levels in my blood have been raising and fucking with my brain. I only found out on accident that that could happen. I spoke with one of the nurses and im waiting for my doctor to call me back to see what we should do from here.

[fawna12]

please

when I was little I did anything to get away

i've ran, i've hid, i've screamed, i've cried

When I was like five I got fucking held down by my mom and one nurse while another one gave the shot to me in my thighs

And yet my family wonders why I'm scared of needles

If I was ever given a chance to communicate or say no or explain? THEN MAYBE I WOULDN'T BE SO STRESSED ABOUT GETTING SHOTS EVERY SINGLE TIME

I've gotten better

but it still fucking sucks every. time.

blood draws are even worse but i've only needed that once so far

Oh, and also. Maybe if your kid says it hurts. Listen to them. I don't know what the fuck is going on with my shoulders yet, but when someone poking them GENTLY hurts for an entire minute afterwards, getting shots definitely hurts more than it should, and it isn't just because their muscle wasn't relaxed when they got the shot

Also on topic of Consent: whenever somebody says "Kids should have bodily autonomy!" some guy always is like "You are too unrealistic. What will you do when a kid is seeing the doctor and doesn't want to get a shot? Would you just let them refuse the shot?"

Yeah I probably would. You're straight up asking the wrong person if you want the nice normal answer here. Doctors and nurses forcibly doing (relatively routine) things to my body against my protests when I was a small kid fucked me up so bad that as an adult anything medical related is a huge trigger for me, I've had persistent intrusive thoughts and recurring nightmares about medical procedures, and I can't have even the most basic tests and health checks done on top of it.

I hate talking about it because I can't get comfortable calling it "trauma" and I don't have any other words that are useful, but it's made my life so much harder and really scary since if I start having a weird symptom, there's nothing I can move myself to do about it.

I figured out a loophole where going to a pharmacy instead of a doctor's office for vaccines reduces some of the stress, but I was still in stress and misery for days before I went to get my tetanus shot. The repulsion is so intense it feels like I literally don't have control over myself, it feels like I can't make appointments or plans about such things out of my own free will, and so every year I have guilt guilt guilt guilt guilt about how I should get the flu shot, and it does nothing but ineffectually hurt me.

Vaccines save lives and all that, but when it comes right down to it, I don't think it's actually a net benefit to public health to give any percentage of kids lifelong psychological scars so deep and painful they're almost completely barred from accessing health care as adults.

I know I'm not the only one, far from it.

[flutterbyfairy]

my old GP refused to discuss my low blood pressure despite it causing symptoms and being 82/45 (tested by a nurse at the practice, who then referred me to see him because she thought it was worrying), saying that it was "normal for young people". my new GP is a bit concerned about my blood pressure being low when it's 96/60!! so probably would have been very concerned when it was lower!! and. AND. she knew what POTS was. i am so glad i changed GPs

[fortitudina]

*OOC. ------ Also, small health update: The doctor from my GP that rang me this morning, thinks I have pneumonia over a chest infection. They've prescribed me steroids and more inhalers, on top of my current inhalers and the antibiotics I'm on and they've said that the x-ray department should ring me to see them by the end of the week. Even they're concerned that with how long I've had it, that it's done even more damage to my lungs than what is already there, with my asthma.

[patroclusdefencesquad]

no one does it like him any more

[brandstifter-sys]

In the US you would think that doctors would take people who come in with problems more seriously since it's expensive financially and time-wise. But nope.

A doctor saying "Good news! Your labs look great" is like if you were watching a cop show and the chief walked in like "Great news, everybody! The best news! The killer is still at large and we have no leads."