#myasthenia gravis

[smoov-criminal]

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

#disability pride month #disability pride #cpunk #cripple punk #multiple sclerosis #marfan syndrome #cerebral palsy #bells palsy #hidradenitis suppurativa #cauda equina syndrome #mixed connective tissue disorder #hyperandrenergic pots #eds #ehlers danlos syndrome #stickler syndrome #mitochondrial disease #cystic fibrosis #sickle cell disease #myasthenia gravis #post-cholecystectomy syndrome #swan #syndrome without a name

[thechronicsloth]

The sunflower is the official symbol of hidden/invisible disabilities.

The gray-asexual (or graysexual) and grayromantic flags on sunflowers, for those grays who also have invisible disabilities.

Feel free to use them and share them, I just ask that you credit me.

If there's a particular flag you'd like on a sunflower just let me know!

If any of you would like to get these sunflowers on pins, stickers, tote bags, clothes, home decor stuff, etc... these and other pride flags on sunflowers are all available in my shop.

Most of my stuff can be costumized, so let me know if you'd like a different background colour, something slightly changed on a design, a design placed differently on an object or available on something you can't find in my shop (as long as Redbubble carries it, of course).

#digital artist #disabled artist #disabled #artists on tumblr #myasthenia #myasthenia gravis #chronic disability #chronic illness #graysexual #gray asexual #grayromantic #asexual spectrum #asexual #acespec #Graysexual flag #Gray asexual flag #Grayromantic flag #aroace #hidden disability #invisible disability #invisible illness #chronically ill #chronically disabled

[meion]

omfg they mentioned my really rare neuromuscular disease out of nowhere in Black Jack... i've never seen it mentioned in any piece of media before ever

Actually i have a rarer congenital version, but the original manga chapter was from 1976, and the first case of Congenital Myasthenia wasn't reported til 1977 :b

#black jack #myasthenia gravis #hehe he pronounces it a little funny #I ran across a lot of doctor names while looking up the first documented date for congenital myasthenia #and its like 'whoa i met that guy as a kid' #its rare enough that i had to go meet the guy who discovered it... i guess cuz no one knows how to treat it

[brainbuffering]

Help a Homeless Disabled Person Shower!

On Sunday 10th September, my carer accidentally left the stove on when she left and caused a fire in the kitchen that spread smoke throughout the house. As a result, I am unable to stay in the flat and am currently homeless and sleeping on my parent's sofa. Because of my mobility issues caused by Myasthenia Gravis, Functional Neurological Disorder, and the fractures in my spine as the result of tonic clonic epileptic seizures, I need a fully accessible walk in shower in order to wash. This means that I haven't even been able to wash the soot off my body from the fire. My Landlady's insurance doesn't cover a place for me to stay whilst waiting for repairs, and it's looking very likely that she will not be renewing my lease in November either. As a renter, I only have contents insurance and it's still not clear if my insurance company are going to pay for anywhere for me to stay.

So right now I am trying to raise some money to book myself some temporary accessible accommodation for a few days locally whilst I try organise everything! You can donate to my Go fund me here!

Every little helps, and if you can't donate than just sharing would be enough! Thank you all so much for your time <3

#personal posts #blog post #actually epileptic #actually disabled #myasthenia gravis #functional neurological disorder

[badassbutterfly1987]

Madame Web (2024) mild spoilers

So I saw Madame Web and I think I liked it. If you enjoyed the Venom movies for their awkward fun, then you might have a good time. Script is definitely messy and there's notable moments of awkward dubbing (especially for the bad guy's lines).

I do have mixed feelings about its handling of disability. In the comics, Cassandra Webb is an older woman who uses a wheelchair and is blind; these are caused by myasthenia gravis (MG), a neuromuscular junction disease, a major symptom being skeletal muscle weakness. Movie Cassandra is a young healthy paramedic; it's revealed in a flashback that she was diagnosed with MG in utero (not possible in real life but anyway), her mother died of a gun shot wound while giving birth to her, and a special spider bite cured her as a newborn (also gave her pre-cog abilities but those didn't activate until an adult near-death experience). Cassandra does end the movie using a wheelchair and blind, but both are due to in-battle injuries.

On the one hand, I kinda get it. The writers wanted an active character running around and protecting these three scared teenagers. It's the lazier option but I wasn't exactly expecting high-quality disability rep from the same writers of Morbius.

But it does feel like a missed opportunity, because they could have chosen an interesting middle ground: have Cassandra start getting the early symptoms, getting a diagnosis, and struggling to come to terms with that. It could tie into her character in an interesting way. She's awkward around people but also pushes people away in fear they'll see her as a burden in a few years, which could also tie into her existing abandonment issues from being in foster care after her mother's death. As a paramedic, she's trying to do as much good as possible before her disability means adjusting to a new way of doing things. And since this disease causes muscle weakness especially after exertion, that could be shown after an action scene where she has to debate how much to trust these girls with her illness while she's trying to protect them, eventually finding a balance where they support each other. That way the movie would be doing something interesting with a disabled character instead of having it tagged onto the end scene.

These changes wouldn't fix the script (and I don't really trust Sony to do it well) but it would make for an interesting layer to Cassie's character. Maybe a fic writer will do something interesting with it.

#madame web #movie review #disability #myasthenia gravis

[crippleprophet]

i hope this is okay to ask, really sorry if it's not!! i was wondering if u or ur followers have any tips for getting a doctor to actually do tests (i can't get a different doctor), or if anyone has better understanding than me of the wording and tests used for fnd

i have a neuro appointment at the end of the month and from our one previous appointment he's already decided i have fnd even tho my symptoms don't particularly fit (and like.. he said i had positive hoovers when he also said i have near normal strength? all the things i have read about hoovers sign talk about it with people who have one very weak limb and other limb with normal strength. he also said i have "give way" weakness but it wasn't that i could hold my limbs up and then collapsed under gentle touch; i could push back for a few seconds but then would be weaker and buckle because my weakness gets worse with exertion. i dunno if he's using these things correctly because from what i can read it doesn't sound like the typical ways it's used but i also can't read a lot before getting triggered). i want to get a EMG with repetitive nerve stimulation because my GP thinks i have seronegative myasthenia gravis, and would like to get a muscle biopsy to look at other neuromuscular causes like MD or mito, but i have no idea how to get him to order these. in the time since my first appointment with him i realised i have scapular winging and that that's probably the causes of my neck and shoulder nerve pain and i know from an old CT that i have loss of cervical lordosis so am hoping that maybe?? bringing up these structural changes in the areas i get a lot of my muscular symptoms Might help convince him it's not functional but i don't have a ton of hope. i'm bringing support people with me but other than that and saying things like "to rule out" rather than "because i think i have" when asking for tests do u have any advice?? or knowledge on the fnd things? i am So Scared for the appointment shshdhdjdj

oh god i’m so fucking sorry you’re dealing with this, that’s such bullshit. i think emphasizing that your GP wanted the EMG is the aspect that’s most likely to be effective, if possible you could also try to get your GP to send the neuro a letter listing the tests they want ordered (which could include ones you propose). i think the fact that your gp is considering seronegative MG is a really good sign so i hope they’ll advocate for you!

idk if you’re in a system / situation where you can go to a different neuro but if that’s a possibility i strongly recommend you consider it. i’ll get into this more in a second but the fact that he’s framing your symptoms through the lens of these signs & that he invoked fnd without conducting any tests is a strong indication that he’s going to push an fnd diagnosis no matter what your test results actually say.

the strength signs aren’t “my area” so to speak so i’ve called in a consult with my gf who is a med student planning on going into neuro :)

so both of these signs are bullshit because they exist as a metric of whether or not to invalidate someone’s symptoms, which it seems like is exactly what your neurologist is trying to do to you. so for me the issue is less how he’s using these signs than the fact that he’s using them, if that makes sense

hoover’s sign is technically defined based on how you’re moving your body rather than muscle strength but some doctors may use it in that form. it’s generally like “your right leg moved when i had you move your left leg so i’ve decided you’re lying about your right leg being paralyzed,” so it’s weird that he’s using it in a context where you’re not telling him you’re paralyzed but it doesn’t mean he’s necessarily acting outside the bounds of the test as it has been constructed, if that makes sense

what you describe you doing – pushing back for a second & then not being able to – is how “give way” weakness is defined; the example you described of holding a limb up & then collapsing without pushing back would be written as a separate exam finding. so as my gf said, “i don’t think he’s using these terms incorrectly per se, i just dispute the value of them.”

you may have already done this for your first appointment but for what it’s worth a lot of people with myasthenia gravis discuss having strategically worn themselves out immediately before going to the doctor (by talking on the phone, darting their eyes around, etc). obviously this takes a certain level of familiarity with your energy capacity on any given day because you can’t then be too tired to get through the appointment… there are definitely certain risks involved as with any intentional act of making ourselves sicker so it’s up to you whether that’s worth it!

there are also some other get sicker MG tips in another post in my myasthenia gravis tag if you want to check that out!

i’m really sorry again that you’re dealing with this, you deserve compassionate & comprehensive care which imo functional diagnoses are fundamentally at odds with. wishing you the best of luck getting the testing you want asap <333

#asks #myasthenia gravis #functional neurological disorder #fnd #neuro

[animasphinx]

because i haven't seen a post for it yet, this disability pride month, shoutout to the people with myasthenia gravis

to the people with MG who cannot chew and are on puree diets

to the people with MG who lose their voice and struggle to speak

to the people with MG who feel self conscious about their "droopy face"

to the people with MG who lost independence of being able to drive their own vehicle

to the people with MG fighting chronic infections

to the people with MG who finally found a regimen that keeps their symptoms at bay

to the people with MG who can't keep their symptoms at bay, no matter what or why

and finally, to literally everyone with MG, even if I didn't name your specific struggle here

your disorder is rare, and not many people know about it, but that doesn't make you any less disabled. happy disability pride month, people with myasthenia gravis!

#actually disabled #myasthenia gravis #disability pride month #autoimmine disease

[sepsisklock]

new oc WIP

#butch #digital art #lesbian #lesbian art #art #oc #original character #butch art #butch lesbian #she believes in aliens #artist #myasthenia gravis #the eye droop is a symptom of her mg #oc art #disabled oc #disabled artist #disability

[gravity-rainbow]

just waiting to see my new neuro.

Not excited.

But the photography is nice.

Thinking about how Nicolas Cage had a dinosaur skeleton.

Life is strange

#August 1 #2023 #myasthenia gravis #nicholas cage

[crpsdesign]

ℂ𝕙𝕣𝕚𝕤𝕥𝕞𝕒𝕤 𝕊𝕨𝕖𝕒𝕥𝕖𝕣 ℝ𝕖𝕢𝕦𝕖𝕤𝕥 𝕤𝕖𝕥 𝕟𝕠. 𝟛

ℕℂ𝕃, 𝕄𝕪𝕒𝕤𝕥𝕙𝕖𝕟𝕚𝕒 𝔾𝕣𝕒𝕧𝕚𝕤, 𝕊𝕐ℕ𝔾𝔸ℙ 𝕒𝕟𝕕 ℙ𝕣𝕖-𝕖𝕔𝕝𝕒𝕞𝕡𝕤𝕚𝕒

You were able to tell me what diseases you would like to see on your Sims' sweaters. I got more requests than I thought possible. I think that's really great. It shows me that many of you think the same way I do.

Here is the third set of four jumpers in 12 colours.

For the first time all T-shirts are printed with German and English text.

Happy Simming

📁𝔻𝕠𝕨𝕟𝕝𝕠𝕒𝕕 𝕗𝕠𝕣 𝔽𝕣𝕖𝕖

🖤 ℕℂ𝕃 𝔽𝕚𝕘𝕙𝕥𝕖𝕣 / ℕℂ𝕃 𝕂ä𝕞𝕡𝕗𝕖𝕣 (neuronal ceroid lipofuscinoses also known as pediatric dementia)

💙 𝕄𝕪𝕒𝕤𝕥𝕙𝕖𝕟𝕚𝕒 𝔾𝕣𝕒𝕧𝕚𝕤 𝔽𝕚𝕘𝕙𝕥𝕖𝕣 / 𝕄𝕪𝕒𝕤𝕥𝕙𝕖𝕟𝕚𝕒 𝔾𝕣𝕒𝕧𝕚𝕤 𝕂ä𝕞𝕡𝕗𝕖𝕣

💚 𝕊𝕐ℕ𝔾𝔸ℙ 𝔽𝕚𝕘𝕙𝕥𝕖𝕣 / 𝕊𝕐ℕ𝔾𝔸ℙ 𝕂ä𝕞𝕡𝕗𝕖𝕣

💜 ℙ𝕣𝕖-𝕖𝕔𝕝𝕒𝕞𝕡𝕤𝕚𝕒 𝔽𝕚𝕘𝕙𝕥𝕖𝕣 / ℙ𝕣𝕖-𝕖𝕔𝕝𝕒𝕞𝕡𝕤𝕚𝕒 𝕂ä𝕞𝕡𝕗𝕖𝕣

Also check out the matching pants

ℂℝℙ𝕊 ℂ𝕙𝕣𝕚𝕤𝕥𝕞𝕒𝕤 ℙ𝕁 𝕓𝕠𝕪𝕤 𝕓𝕠𝕥𝕥𝕠𝕞 𝟙 ℂℝℙ𝕊 ℂ𝕙𝕣𝕚𝕤𝕥𝕞𝕒𝕤 ℙ𝕁 𝕘𝕚𝕣𝕝𝕤 𝕓𝕠𝕥𝕥𝕠𝕞 𝟙 ℂℝℙ𝕊 ℂ𝕙𝕣𝕚𝕤𝕥𝕞𝕒𝕤 ℙ𝕁 𝕓𝕠𝕪𝕤 𝕓𝕠𝕥𝕥𝕠𝕞 𝟚 ℂℝℙ𝕊 ℂ𝕙𝕣𝕚𝕤𝕥𝕞𝕒𝕤 ℙ𝕁 𝕘𝕚𝕣𝕝𝕤 𝕓𝕠𝕥𝕥𝕠𝕞 𝟚

Terms Of Use:

link back to original post if you recolor/convert

do not put my content behind Patreon or adfly

#sims 4 cc #sims with disabilities #sims4awareness #the sims resource #sims 4 awareness #crps design #sims infants #sims clothes #SYNGAP #myasthenia gravis #preeclampsia #NCL #dementia #pediatric dementia #sims 4

[varlaisart]

Surgery a week from Thursday got me like

For real tho I just hope it helps with symptoms. My whole life has been interrupted by Myasthenia and I’m just over it.

#chronic illness #ignore me #myasthenia gravis #myasthenia sucks

[thechronicsloth]

The sunflower is the official symbol of hidden/invisible disabilities.

I've started a series of sunflower pride flags, for those of us who live with an invisible disability and who are lgbtq+.

(Feel free to use and share these online. I just ask that you credit me).

So far I only have these four (pride, lesbian, bi and pan), but more are coming! They're all available in my shop on all sorts of merch. From tote bags, stickers and pins, to clothes, home decoration and bags.

Go check it out!

Most of my stuff can be costumized, so let me know if you'd like a different background colour, something slightly changed on a design, a design placed differently on an object or available on something you can't find in my shop (as long as Redbubble carries it, of course).

#digital artist #disabled artist #disabled #artists on tumblr #myasthenia #myasthenia gravis #sunflower #invisible disability #hidden disability #chronically ill #chronic disability #chronic illness #lgbt pride #pride #queer community #pride flag #bi flag #pan flag #Lesbian flag #sapphic #bisexual #Pansexual #gay #gay art #gay flag #lgbtq community #lgbtq #lgbtqia #lgbtq+ #pride flags

[mrsmarymorstan]

Did I mention here that I'm debating getting a wheelchair? Not for every day use, just for when I need to go somewhere going to require a bit more walking. Like, I have a new GP that's closer than my old one. At my pre-FND walking speed I could manage it in 5 minutes. Now it would probably take half an hour with breaks in between. But if I got myself an electric wheelchair or scooter I could just go whenever and not have to worry about that stuff!

Problem is finding both the money for a chair, and somewhere to store it =\

There are schemes in England to help fund wheelchairs, but I'm not entirely sure if I'd qualify. I'm going to ask for a referral from the GP/FND specialist for a review because, you know. It would be nice to be able to travel the length of Waterloo Station without feeling out of breath ^^;;;

#Morstan Meta #Myasthenia gravis #FND #actually disabled #I'll still keep the Rollator for other stuff because maintaining some level of walking is good for me #but like.... I also need to be able to go to Doctors Appointments even if I'm feelinf unwell lol

[his-grace-mark-tsar-of-tartary]

I am in a lot of pain constantly but I go on. Some days I don't want to but I do.

#myasthenia gravis #autoimmune #fibromyalgia

[budgieio]

Having a bad day tremor-wise so I made some memes

#budgie.speaks #myasthenia gravis #tremors #they be shakey boys sometimes #going digital has honestly saved my love for art

[nezumiko]

I rarely see anyone else with MG even in disability spaces so when I saw your addition to the 24-hour shops post I just figured I'd say hi same hat/rare disability!

Same hat! I'm delayed in answering because I was, as you read, dealing with a flare up. After three rounds of IVIG and enough prednisone to make an elephant an insomniac, I'm finally stabilizing.

I want to sit down and bond with you over all the hat-related things XD As you say, there are rather few of us. I'll PM so it doesn't have to be a public convo. Thanks for saying hi!

#myasthenia gravis #asks #same hat #downwarddingo #rare disease