Dystonia

I got my diagnosis in Oct 2024; late on set generalized Dystonia with myoclonic movements. It took15 years of fighting to be heard to get this diagnosis. Had my neuro given my diagnosis of “late onset generalized myoclonic dystonia” then I would fall into the zebra ratio of 1:500,000. An ambiguous number because it’s a disorder apparently the medical community does not exactly know how many of these zebras exist. I am a human zebra clouded in mystery.

Hello, I am in my early 30’s and have had Dystonia all my life.

Hi, my name is ginwar1973. I've been diagnosed with

#MightyTogether #Dystonia

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.

#MightyTogether

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

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.

#MightyTogether #PTSD #Migraine #Anxiety #Grief #Depression

Hi everyone September is dystonia awareness month wanted to share that with you . Thinking of you all whatever your illness or challenges when we think we are at our weakest we are at our strongest . Best wishes take care .

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

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.

Hi, my name is EES041214. I'm here because

#MightyTogether #Depression #Anxiety #Migraine #ADHD #PTSD #EhlersDanlosSyndrome #ChiariMalformation #DegenerativeDiscDisease #Epilepsy #OccipitalNeuralgia #Dystonia #PosturalHypotension #TemporomandibularJointDisorders