#myopathie
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i am so tired of this fucking pain. and feeling like i have a respiratory infection & the flu every single fucking day of my life. this is no way to live. even while i lie here as still as can be, tears will slowly flow from my eyes & the tears feel like boiling water on my skin. i grew up in a stoic irish family where you handle. your. shit. but, i have learned that bottling emotions is toxic & i am trying to get better at "sharing."
my sleep has been plagued with nightmares stemming from my pain of having limbs amputated, being stabbed, being burned etc. my sleep is terrible, i am not eating substantial meals & just feel alone even when people are around.
if you made it this far, bless your sweet face. i appreciate those of you who check on me. if you want to help me with meals & a couple of my prescriptions this week, it is of course incredibly appreciated.
cashapp: $dryboneslive / venmo: dryboneslive
luv, cuddles & cauldron bubbles, the ghost queen 👻
#ghost queen#fuck this#scleroderma#arthritis#ehlers danlos syndrome#pcos#rheumatoid arthritis#disabled sw community#chronically ill#this is hell#queer#myopathy#connective tissue disease#autoimmune#thank you for caring
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I'm still in happy awe of my new physical therapist who asked what *I* wanted to get out of physical therapy verses just trying to "get better"
More physical therapists should do that, huge W right there.
#cripplepunk#i have a type of muscular dystrophy called mitochondrial myopathy#it means ill never 'get better' and my goals are 'prevent contractures and deal with less pain'#anyone can reblog
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Mutations at Heart
Filamin C protein is key for maintaining the internal structure of both heart and skeletal muscle cells. This study reveals mutations in the filamin C gene and their molecular effects underlying cardiomyopathies
Read the published research article here
Image from work by ES Klimenko and colleagues
Almazov National Medical Research Centre, Institute of Molecular Biology and Genetics, Saint-Petersburg, Russia
Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)
Published in Cytoskeleton, September 2024
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shooting “qualifying diagnosis” down with thousand laser beams
#those without neurological disorders & myopathy & congenital skeletal things who have group 3 PWC!!! how!!!!! HOWWWWWW#🍞.txt#wheelchair user
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when i can't feel for control my hand
vs
hand is (mostly) there later the same day
#droodles#not to be talking about it all day but it was really upsetting me until i got feeling back this afternoon#i was still drawing the whole time it was just. Wrong and Off#paresthesia and myopathy combo is so cool 👍#ocs#rhys#da2#hawke
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I kind of am tired of those posts that say things along the lines of “you’re so young! You have all this life ahead of you! Think about what you will get to enjoy in the next 50 years!” Because… that’s not my life. Like, obviously I am happy for those that those posts are helpful to, and some things are just Not For Me and I respect that. But it still makes me sad to see posts that talk about how your life is still barely started in your 20s and 30s because that is not the case for me. My life is ending in my twenties. Maybe not in an actual, ‘I’m going to die’ sort of way (although I might, we just don’t know how unpredictable my body can be), but I have a severe muscular dystrophy. Almost everything I have enjoyed my whole life is becoming or has becoming inaccessible for me. I had to get rid of so many of my animals, I can’t really ride or take care of horses anymore, I lost both of my jobs that I loved, I can barely walk. My favorite stores are not accessible by wheelchair. I cannot be upright long enough to bake myself that “easy! Enjoy your life” loaf of bread, or cook myself fresh food. My diet is almost entirely microwaved. I cannot take myself on a walk for my mental health. I have to accept that soon I will not be able to walk at all anymore, to draw at all anymore, to sew, to dance, to sing. My vision is double and so watching tv is hard for me. It’s getting hard to hold up my handheld video games or my iPad. Eventually, I will not be able to turn myself over in bed and will need someone to rotate me every few hours, to help me use the bathroom, to bathe me. This post isn’t to say “Don’t make happy, encouraging posts” anymore but really more a vent. Maybe saying “other people will have different experiences.” You cannot act like everyone has the ability to better their life and look forward for the future. My body prohibits it.
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i cant believe i have a congenital muscular disease. my titin proteins are wrong. thats what my problem is. what da hell.
#ha dmy genetics results appt today.#we were checking cardiovascular myopathies jic#we did not expect to get anything out of that. now we have rhe Explanation#i thinj this is rhe most 'rocks ur world' doctors appointment ive had since . idk. fuck#i tried to find tags for this here and dont see any#is there a community for this??? oh god#i looked at a foundation website to sign up for to get in studies and trials and reading the front page made me cry
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First treatment's (methotrexate) been deemed a dud after 2 weeks. :( It's frustrating but I'm glad my doctor listened to me when I said the insane brain fog I got from it was completely unacceptable as a side effect (it's a huge reason for why I haven't been able to work on anything all month 😑 and it's started impacting work-work now). Though it might be the sudden blurry vision that tipped it. The fatigue/exhaustion has been unreal. It's crazy how things can affect your brain so much. Finally stepping down the prednisone, too, so here's hoping those side effects lighten up.
I think they're having me try Imuran next? Another visit for bloodwork first...
#for real I feel like my brain is in a fishbowl#I feel like I've been disassociating since I took Friday's dose#necrotizing inflammatory myopathy#fancy's grumblings#mrfancyfoot#methotrexate#I have bloodwork done so often I wish it were cute vampires I was seeing lol
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I’ve been seeing posts about horses displaying EDM symptoms and being euthanized for behavioral issues everywhere recently. It’s horrible how under-suspected it is.
Remember, if a horse has erratic behavior, violent or explosive behavior, or trouble going up or down hills, these are all common symptoms and a nuero issue shouldn't be ruled out even if a horse comes back negative for epm/lyme/pssm/wobblers etc.
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Some of the most common neurological disorders include:
Stroke: A stroke is a sudden loss of brain function caused by a blood clot or bleeding in the brain.
Multiple sclerosis: Multiple sclerosis is a chronic disease that affects the central nervous system. It is characterized by inflammation and damage to the myelin sheath, which is a protective layer that surrounds nerve fibers.
Visit: https://symbiosisonlinepublishing.com/neurology/
#symbiosisonlinepublishing#researchstudy#research#openaccess#peerreview#pubmed#journal#journals#trypanosomiasis#encephalitis#meningitis#myastheniagravis#myopathies#melancholy#bipolardisorder#parkinsonsresearch#parkinsons#parkinsonsdisease#alzheimers#Schizophrenia#epilepsy#spinalcord#centralnervoussystem#peripheralnervoussystem#peripheralneuropathy#neurologicaldisease#neurologia#neurologicaldisorder#neurologist#neurological
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*kitty stretch & yawn* ooh, it is a beautiful day to tell me that i am haunting & send me monies 💁♀️😉
but seriously, i had a really rough fucking night. lots of pain, lots of nightmares. i am going to try to get groceries today as well as a couple of my prescriptions plus (hopefully) a new heaty pad & arthritis gloves.
any help is immensely appreciated. for realsies 🖤
cashapp: $dryboneslive / venmo: dryboneslive
paypal: message me for email
luv, cuddles & cauldron bubbles, the ghost queen 👻
#ghost queen#thank you for caring#scleroderma#rheumatoid arthritis#ehlers danlos syndrome#neuropathy#queer#myopathy#chronic pain#disabled sw community
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Oh shit happy 2 year anniversary to the time I got misdiagnosed with "even if you go to the Mayo Clinic or one of the other big experimental university hospitals they probably won't be able to figure you out."
One month later, I found out they misinterpreted my muscle biopsy results and I actually had mitochondrial myopathy, a type of muscular dystrophy/neuromuscular disease, so I basically got the meanest April Fool's prank ever by the universe.
#mitochondrial myopathy is hard to categorize because it does cause muscle breakdown and increasing weakness like a dystrophy#but it also causes neuromuscular issues like ALS and Parkinsons#but its at its core a metabolic disease
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Subject to Contract
Fine details of the protein complex that underlies how an electrical signal effects muscle cell contraction revealed and sheds light on mechanisms of myopathy (muscle disease)
Read the published research paper here
Image from a video from work by Eline Lemerle and colleagues
Institut de Myologie, Sorbonne Université, INSERM, Paris, France
Video originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)
Published in eLife, April 2023
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being mistaken for a girl is funny when it makes a dude literally double take upon entering the men's restroom but most of the time it's a stranger trying to make some kind of human connection with me until they realize i'm not a girl and immediately become cold and leave me alone
#which is at best extremely disheartening#and i was born with a dysfunctional heart so i know a thing or two about cardiac myopathy
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best ayurveda treatment for stroke in kerala
Vaidya Health Care provides an effective Ayurvedic stroke recovery program, featuring personalized herbal treatments, Panchakarma detox, and integrated physiotherapy and yoga. Our expert practitioners focus on holistic healing to improve neurological health and restore balance. Contact us to learn more about our approach to stroke rehabilitation.
Vaidya Health Care Ayurveda Hospital
Visit : www.vaidyahealthcare.com
Address
Vaidya Health Care Hospital MC Road, Vattakatupady Perumbavoor, Ernakulam ,Kerala India 683542 +91-9744-55-3000 , +91-99959-22289 [email protected]
#best ayurveda treatment for stroke in kerala#ayurvedic spinal cord rehabilitation in kochi#ayurvedic de addiction centres in kerala#ayurvedic treatment for arthritis in kerala#yoga therapy in kerala#panchakarma treatment in kochi#myopathy ayurvedic treatment in kochi#best ayurvedic hospital in ernakulam#ayurvedic male fertility treatment in kerala
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fawn that got stuck in my yard the other day
#unfortunately did not survive. mfw everyone is standing around like are they supposed to die that easily...#and they do actually die of fear that easily . capture myopathy / cardiac arrest#we had to move it regardless like it was stuck in the yard...the deer are always hopping my fence but my dog was out & scared it ._.#he didnt mess w it or bark or anything but still ...#took liek 2 days for him to stop looking suicidal ik pyrenees are very concerned abt the wellbeing of other non predatory animals but he#srsly stared at the wall for the entire next day like sat in the corner listless and miserable#if u sign deer at him now (hes deaf/has sign for deer bc theyre always in the yard) he looks at u like u killed his whole family
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