Dopa responsive dystonia

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Dopa responsive dystonia
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    I’m so happy to find you.

    I was diagnosed in February of 2020. I was depressed about my diagnosis and also excited about how much I could do after taking carbadopa/levadopa. I’d spent most of 2019 in bed and only had 5-7 days a month that I could function.
    My dystonia mostly effects my neck, shoulders and face and I was first diagnosed with chronic migraines. When it started causing spasms that made my right side of my body move uncontrollably, I finally understood what was happening. My mom was diagnosed with adult onset dopa responsive dystonia in her 40’s and this is what it looked like. I did not want this disease and feared it for over 20 years. It was traumatizing and scary. I felt hopeless.

    I made an appointment with my neurologist and he put me on carbadopa/levadopa. Getting used to the side effects sucked but I could move my head further than I had in years without it triggering a migraine. I started thinking about taking on other problems like my PTSD and being able to do more as a parent for my teenage kids. I was feeling hopeful, it was March of 2020. Covid hit and the world stopped right when I was ready to embrace it again. Dealing with this pandemic while trying to come to terms with my diagnosis has been so isolating and discouraging. Finding this group feels like I’m not alone. Thank you for being here.
    #DopaResponsiveDystonia

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    Dystonia Awareness #Dystonia #Myoclonus #MovementDisorders

    #dystoniaawareness #injectionoverload #sleepdeprivation #dystoniamovesme #butwaittheresmore #movementdisorder #DopaResponsiveDystonia #keepyoursenseofhumor #princessparking
    I will get it all out in one post, the bad-the ugly-and the positive adjustments.
    It's parkinson's ugly cousin. It's your muscles running a marathon without your permission. One day you stumble like a drunk, the next you have tremors that make you look like a junkie and some days you misplace your words. Jaw spasms=cracked teeth and migraines. Calves in a permanent state of "half of a Charlie horse". Rib spasms are the worst, except that glute spasms are the worst worst, but wait there's more!
    Dystonia gives you FASCICULATIONS (tiny lightening bolt, snake under your skin, leaves you with the attention span of a flea on crack plus keep you awake all night spasms) and MYOCLONUS (jerky, I didn't mean to kick you out of bed, I'm don't need a sweater- random shivers spasms). And the gift that keeps on giving- you can have all of them at the same time which is called a "storm"⛈️
    As one neurologist explained "It's not all in your head.... it's all in your brain"
    40+ injections every 90 days=3-5 almost tolerable weeks in 90 days.
    Now, onto some positive things....
    I am so very lucky to have a supportive husband, son, family and friends. I truly appreciate those 3-5 weeks and try to enjoy the little victories. When my head tremor is active I can turn up the car radio and appear to really know how to jam. I do a great impression of a metronome and a pincushion. I may be "economy sized" but I have calves of steel. I have a cane and I am not afraid to use it. My amazing Dr's in Arizona have been able to time my Dystonia and Arthritis treatments so I only have a REALLY bad month a couple of times per year. I'm definitely not afraid of needles. I have an amazing collection of ice packs, heating pads, and pictures of my brain. The closer they come to helping Parkinson's patients the closer they come to curing Dystonia.
    Dystonia moves me.

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    anyone out there deal with this? #Migraine #DopaResponsiveDystonia #DopamineResponsiveDystonia #Fibromyalgia #Seizures #PeriodicParalysis

    I’ve been diagnosed with dopa responsive dystonia, fibro and complex migraine. last night I experienced leg twitching/restless legs followed by paralysis in both legs when I tried to get upstairs to take a sinemet, followed by a strong short seizure (I was fully conscious), followed today with a massive migraine, fatigue,like a severe postdrome. does anyone else go through events like this?

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