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  • About Dystonia
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    Community Voices

    I'm new here!

    Hi, my name is pripri. I'm worried about my daughter who was diagnosed and over-medicated, due to over medicated she now suffers from something called "DYSTONIA to her Neck. Because of her struggle she is now turning to the street 'Excasty" for relief. I don't know how to help her aymore


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    2 Steps Forward 6 Steps Backwards

    Do you ever feel like every time you make any progress with your illness/disease you win a little then it knock you so much father back that you will never get back to were you were before?

    So I have FND which means my nerves and brain function abdominally and communicate about as well as toddlers playing the telephone game. Add in a sprinkle of Tourettes Syndrome and Sensory Processeing Disorder, Migraine, Dyskinesia, Dystonia, and we are currently exploring epilepsy. All this results in me being confined to a wheelchair at least 85% of the time and need to be supervised if I am not. Along with eating difficulties, communication problems ect...

    I have to go in for occupational therapy and physical therapy once a year to help me maintain quality of life. Sometimes we add speech or cognitive to spice things up if I need it . All these therapies are great and can act as kinda a filter on how to adapt my life to limitations and give some good ideas on how to make life easier within my limitations my body has placed on me. However it always feels like we make a little progress with them and once I "graduate" out of them (stop making progress usually after a the first 2 months) my body starts to decline again even though I countue to do my home programs (hey I want as much quality of life as I can get I mean I turn 20 in the fall I will take what I can get). This happens with me staring to fall more, my hands start to get weaker, I drop more weight, ect.

    2 steps forward 6 steps back.

    Every time. It seems like I am on this never ending loop of yes some progress. Whap out of no where I get worse ...

    2 steps forward 6 steps back.

    It's like this dance me and my body play. Oh you gonna work to try and get better. Sike now your worse enjoy the new wheels.

    2 steps forward 6 steps back.

    Around and around we continue this dance and we can't seem to figure out why this downward spiral keeps happening. Like I'm not gonna keep fighting for my quality of life but man would I like to stop this dance or at least hit pause for a bit.

    2 steps forward 6 steps back

    It's exhausting. I just moved and my new pcp asked if I had made any progress on getting better and it hit me that no actually I keep getting worse and my symptoms keep getting more debilitating as time goes on. So now we redo all the testing and redo all the things to see if anything has changed...

    2 steps forward 6 steps back.

    Anyway I'm just excused with everything. I'm still gonna try and still gonna give it everything I got which honestly isn't much at this point. Still gonna give it a go. Got to continue this dance in homes that some day it will be 6 steps forward and 2 steps back instead.

    #FunctionalNeurologicalDisorder #ChronicFatigue #ocupationaltherapy #PhysicalTherapy #notmakingprogess

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    Why am I here?

    23 years ago this month I got into an auto accident that hurt me a great deal physically and would later progress into segmental Dystonia.

    I feel very very ambivalent this month each year because I’m not sure why I survived. So I take it easy on myself and become pretty quiet.

    I don’t know and I don’t believe anyone does. So I do the best I can after surviving a coma, broken bones, a ruptured spleen, etc. Sometimes it’s best to just be quiet and other times it’s best to get busy.

    We’ll see how it goes today…

    13 people are talking about this
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    Community Voices

    Hey, everyone! I have POTS but I also experience myoclonus and dystonia-like movements. They are much worse in the evening. The two neurologists I have seen have both suggested FND but the treatment is not working and I don’t have mental health problems. All of my symptoms improved with POTS treatment but relapsed after having COVID. Has anyone here experienced anything similar? Sorry for the length.

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    Community Voices

    chatcat761 Cathy Carlile Turner

    #chatcat76  I'm so excited...I found myself! Please don't reply to the text in the title as this is my home. I'm so sorry. I bet I'm the first one to make a mistake! The name of my closed group is Let's See the Patient. I'd love for you to join, as I'm getting all my writings together about my Chronic illnesses and I love to help make appointments go better. Soon, when I'm eligible, (I'm new, so I might not be "old" enough yet), I'd love to do "rooms". I'll get my story in asap. But I'm pausing for a flare to end!

    Have a good ??? My husband forgot to tell me what day it is.


    #TBI #Dystonia #CervicalDystonia #Neuropathy #Virus #EpsteinbarrVirus #LymeDisease #CpapMachine #Relationships #DoctorVisit

    Community Voices

    The Actress!

    <p>The Actress!</p>
    Community Voices
    Community Voices