#Chromosome #Dystonia #develomentaldelay #delayHi, my name is Melanierae18. I'm here because my 13 month old daughter has a developmental delay and a 4p16.1 chromosonal duplication, I would like to learn more about this group of duplications because there is little studies on them. There is barely any studies on my daughter's duplication which makes it difficult to understand what she is going through.
#studies #Understanding
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#Dystonia I have recently been diagnosed with vocal dystonia and they think it is a neurological side of the antipsychotic drug I have been on for 21 years. It started with constant throat clearing for the last 2 years, and my doctors had no idea what was causing it. I could not stop. My sister and daughter dealt with it by turning the music up to drown me out. ( not funny) Six months ago the spasms started which caused exhaustion and pain in my throat. I was choking a lot, even waking up in the night choking. I’m coming off the medication slowly, drinking water, honey tea, resting and putting heat on my neck. Will this go away? Is there a medication to stop the spasms? You can see the throat/ vocal cords moving constantly from the outside. I feel like I’m going crazy! Any info would be helpful.
#Depression I am weaning off Seroquel after being on it for 21 years. I have developed some neurological side effects and I am desperate to find out why. I’ve had Tardive Dyskinesia and now Vocal Dystonia. My vocal cords are in constant spasm and it’s painful and exhausting. My doctor is taking me down very slowly because I’ve had trouble coming off of meds before. I seem to have dizziness and headaches but that’s not too bad. I have very little support and was just looking for any hints.
Laurie #MentalHealth
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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.
Hi, my name is ginwar1973. I've been diagnosed with
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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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