#i think i should put a tw for like. negativity about the autism but i'm not sure

[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)

[talkethtothehandeth]

hi, i hope it's okay for me to bring up something in your carrd to warn you about. it's a really bad idea to put the usa suicide hotline up as a resource because i and other mentally ill people have been hurt by it. anyone who reaches out for help will be very unpleasantly surprised by the operator actually sending the cops to your house despite not seemingly intending to in order to "make sure" you go to the hospital just for contemplating thoughts of self-harm alone. we have been traumatized by being kept at wards involuntarily, especially wrt the painfully unsafe and uncomfortable furniture, as well as abusive staff who punish(ed) us for being scared and wanting help... or, y'know, actual treatment. maybe this is just me and my bias as an anti-psych activist but i'm speaking from my own, as well as others', experiences (and i can only imagine how physically disabled people are treated with disrespect). also, i apologize but i don't have any good alternatives to replace the link with instead, so i hope you don't discard my criticism. i simply don't want this to happen to anyone else who might wish to reach out through your well-intentioned advice. please take this message in good faith and have a good night.

TW suicide/suicidal ideation

Howdy!

You’re absolutely not overstepping by sharing this and the negative experiences/feelings you have regarding the subject of using a hotline. Though my blog focuses more on physical disabilities, I am diagnosed with multiple mental disorders that aren’t my autism and adhd, including bipolar type two, anxiety— which might be OCD, and a different personality disorder which I don’t talk about much due to demonization and stigmatization of it, it also isn’t something I’ve fully accepted myself, but that’s another post. I hear you and recognize the harm that psychiatrists/institutions have inflicted on people. I also am aware that these resources, regardless of the negative aspects (which, let’s be honest, there are a lot) are some of the only options that people have.

My psychiatrist/therapist’s [I’m forgetting the exact word for the building] has a crisis line, and the second thing I was told when the number was given to me, the number that can be reached whenever, was that if they think I’m in immediate danger, they would send the police to my house. I’ve come very close to getting into a ward, but I’ve never been forced into one. I am incredibly thankful for that as I know I probably wouldn’t receive adequate pain care there, but just because I haven’t been forced into one doesn’t mean that others haven’t, as you said.

I’ve kept it there because it should be an option still, I’ve had to call multiple times before and I’ve had some good interactions and some not good interactions, I am scared that they will do the same, which is allowing cops into a situation they are not adequately trained for. However, through this, I know that this hotline has still helped people, and has the crisis text line. I don’t want to take it away, but I think I should try to figure out a way to like, explain the potential risks. Everyone is allowed to make the choice for themselves about whether they want to seek outside help in order to aid in their times of distress. I text the crisis line, but many a times, especially during the late nights, they do not answer. Some of them are not helpful, but others are and it’s at times enough to just talk about things. I tell people I have suicidal thoughts, but not a plan, because no matter how much my brain tries to convince me I want to be dead, I understand that this is part of my disorder. There have been times when I’ve tried to take my life, too.

I hear you, and do not devalue your criticism based on your personal experiences, or the experiences of others. It seems to be a “hit or miss” kind of thing when it comes to psychiatric care, and I feel it is similar to us who are also physically disabled. Even though I’ve had some very bad experiences and have been mistreated (to say the absolute least) I’ve still found physicians and nurses who do treat their patients with dignity and respect. And just because I’ve had a few good experiences, it doesn’t mean that suddenly my medical trauma is wiped away.

It is saddening to know how rare it is to have these good encounters, especially with someone whose job it is to help care for something as significant as mental illness. And I feel the same for doctors being horrible about physical disabilities. Additionally, and rewording what I mentioned just in the other paragraph, these options should still exist for people to have the choice of pursuing a hotline, a doctor, or any sort of health care treatment. They can decide if they want to try, just as others can decide that it isn’t for them, whether it be from personal or outside experiences.

My page is welcome to criticism, I keep my anon and messaging open that way those who want to say something can. The one and only time I dismiss “critics” is when people send in nasty messages (like suicide bait). You are not wrong or bad for defending/supporting your position, and I never will take away the validity of other’s experiences just because mine have been different.

TL;DR: I absolutely agree that the mental health field is not as it should be, I agree it can be just as rotten and misguided (those are understatements) or even worse than how doctors who treat physically disabled patients. However, I do believe that keeping these resources can also be beneficial to a person, who is ultimately making a decision whether or not to utilize what is available. I do not support the incorporation of police in mental health situations, and I firmly believe that improper psychiatric care, just as physical care, can be detrimental to people. I understand the negative impacts, and as you mentioned, you (generalized) don’t have a good alternative. Until I am able to find one, I keep this in my carrd.

[mxflintoldblog]

The absolute terror of sending one (1) message to ask about something. The autism sure doesen't make things easy. And mixed with the anxiety it a treat, really. I love not being able to function properly.