#doctors tw

[andillwriteyouatragedy]

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

[herigo]

화이팅!!!

[fairyfawm]

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.

[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.

[fairyfawm]

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.

[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."

[paradoxesofgalaxies]

A little over an hour after my appointment was supposed I finally got a phone call. It ended up being a good appointment. They're changing my TN meds so hopefully that will help. The med I'm switching to should have less side effects so 🤞

[one-time-i-dreamt]

It became a trend to tell someone that you wanted to eat their organs as a way of saying that you thought they were cool or attractive, and there was a news article claiming that David Tennant (the former Doctor Who star) signed a legal document saying that he was legally allowed to sue people if they told him they wanted to eat his organs because it made him extremely uncomfortable, but also that he would NEVER eat anyone else’s organs or this form would be used against him in court.

[chappellsroans]

Doctor who - The Star Beast (2023) + text posts

[thebibliosphere]

I had a severe mast cell reaction to something last night for the first time in the longest time* and I can honestly say, hand on heart, I have no idea how I lived like that 24/7 for years.

I have no idea how I dealt with that nightly as a child, only to be yelled at and told to stop attention seeking, while last night my partner held me while I shook and prepared to stick me with an epi pen.

Thankfully he didn’t have to. Thankfully my airways cleared after my body purged itself of everything I’d eaten yesterday** and my heart rate began to climb down. But Jesus Christ, I am wrecked this morning.

* no idea why, only thing I can think of is hormones + sugar which can sometimes raise histamine levels

** everyone thinks anaphylactic reactions start with visible swelling and airway constriction, but for me it’s always been the much slower reaction of severe gastric symptoms which progresses to rapid elevated heartbeat, followed by agonizing acid reflux that burns through my whole chest and then if it doesn’t stop, my airways start to close while I simultaneously start to “fall asleep” (that’s the shock.)

Very rarely do I get visible swelling or hives unless whatever triggered the reaction was from skin contact or injected into my veins. So, just so you know, anaphylaxis doesn’t always look the way it does in the movies. I tell you this only in case it saves a life one day.