Hi, my name is dystopia2. I'm here because I've just been diagnosed with Dystonia and support my adult son who has Stargardts Disease. Looking for support and comradery with others who have a little extra stress add to thier lives that most don't understand.
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Hi, my name is CosyMariposa0517. I'm here because I like meeting others who have what I have because I don't know many who have the illness that I do.
#MightyTogether #Migraine #Fibromyalgia #Crohn 'sDisease#Dystonia #Ataxia #COPD #FunctionalNeurologicalDisorder #Asthma
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Hi, my name is rainbowbutterly. I've been diagnosed with medical PTSD. My journey began during a long period offf time (12yrs) of multiple mystery illnesses. in the first 7 years I experienced 3 NDEs 4 major surgeries, my oldest son being diagnosed with a terminal type of MS, and his passing 5 years after his first neurological attack. thus followed a period of grieving while still dealing with my many illnesses. about nine months following his passing I had one more brush with near death when my sodium suddenly dropped to 110. unable to move or talking and in severe full body dystonia I was admitted to critical care ICU. I was not expected to survive but by the grace of God, I survived and with no residual damage to my failing organs, as predicted. a major move followed this which locked me in self isolation, being terrified to begin anything new r make any commitments never. knowing when I would become ill or drop in sodium. I am now on Ketamine Infusion Treatment for my Medical PTSD and trying to begin living free once again.
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Hi, my name is Ljharrison91. I'm here because
#MightyTogether #Fibromyalgia #Bipolar2Disorder #Migraine #EatingDisorder #AnorexiaNervosa #BulimiaNervosa #OrthorexiaNervosa #OCD #Asthma #PTSD #ComplexPTSD #GastroesophagealRefluxDisease #IrritableBowelSyndromeIBS #Gastroparesis #EhlersDanlosSyndrome #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #Hypoglycemia #MajorDepressiveDisorder #SocialAnxiety #GeneralizedAnxietyDisorder #AutismSpectrumDisorder #ADHD #Alpha1AntitrypsinDeficiency #ChronicPain #ChronicIllness #RestlessLegsSyndrome #NeuropathyHereditary #TemporomandibularJointDisorders #Bursitis #OccipitalNeuralgia #TrigeminalNeuralgia #ChiariMalformation #Dystonia
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Hi, my name is becchae. I've been diagnosed with Ehlers-Danlos-linked Dopa-Responsive Dystonia. Basically my muscles contract so hard that they yank my joints right out of their sockets. Thankfully levodopa helps enough while I'm awake so that my joints only sublux a bit, not fully dislocate. I am nearly fully bedbound. 6 months ago I was an active and healthy 23 year old. Now I have no purpose, happiness, or peace. I do blame this on the doctors that wasted months, in some cases years, assuming I was a drug seeker or a psychiatric case instead of a neurological case, which allowed my disorder to generalize all over my body and resulted in permanent brain and nerve damage. I cannot feel entire parts of my body and what I do feel is always pain. I will never trust a doctor or a hospital again, not that I ever really did to begin with. I am, however, now a wealth of resources because nobody knows anything about my condition. So come chat with me about POTS, EDS, Dystonia, hell, Parkinson's. I'd love to feel a tiny bit less useless stuck here with everything that has every brought me joy ripped away from me in a few short months by the ignorant and unempathetic.
1 reaction Hi, my name is EES041214. I'm here because
#MightyTogether #Depression #Anxiety #Migraine #ADHD #PTSD #EhlersDanlosSyndrome #ChiariMalformation #DegenerativeDiscDisease #Epilepsy #OccipitalNeuralgia #Dystonia #PosturalHypotension #TemporomandibularJointDisorders
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Functional Neurological Disorder (FND) is a debilitating condition that causes a wide variety of symptoms. Although there are lots of similarities in the symptoms that a person experiences, the variety of the symptoms & the severity of those symptoms differ greatly from one person to another. This is where ‘FND Bingo’ comes in – it is an interactive way to help to raise awareness of FND as a condition; shows the variety of symptoms associated with it & how these debilitating symptoms are as unique as the individual experiencing them. The original image, now known as the ‘FND Bingo Card’ (created by @functionallyjess), consists of 15 of the more common symptoms of FND – Functional Seizure, Dizziness, Walking Difficulty, Weakness, Dystonia, Migraine, Chronic Pain, Numbness, Memory Issues, Sleep Issues, Functional Tremors, Paralysis, Sensory Issues, Swallowing Issues & Spasms. A sample of 25 of these FND Bingo Cards indicate how common these symptoms are among people living with FND. No matter how FND impacts you, there are people who understand the challenges you face.
🧡💙
@fndhope @sassyfndlife #FunctionalNeurologicalDisorder
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Hi, my name is Veronica OHara. I'm here because meet others like me
2 reactions Hi, my name is jonestra. I have Complex Regional pain syndrome, as well as 8 more chronic pain diseases. I hope to find others who have what I have . Fibromyalgia, Ankylosing Spondylitis, Psoriatic Arthritis, Trigeminal Neuralgia, Gastroparisis, Hypothyroidism, Cervical Dystonia, lymphedema, I hope to meet others with my diseases so I can learn more about each of them I have had Complex Regional pain syndrome for 23:years this June. I was healthy until getting this and now I live daily with something flaring.
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