I have generalized dystonia. I had it since I was 6. I had suffered for two years trying to know what I had. When I as told I had dystonia I was bound to a wheel chair because it was so bad I couldn't walk or stand. I had DBS surgery in Texas at age 8 and i gained my mobility back. Now people can't even tell i have it. I'm currently 14 and I'm known for it in guilford Connecticut. I raise aware ness campaigns for it so I could help others like you. I'm trying to say that your not alone, and I hope you get better.

Mathew, you're a hero to us! Thank you for sharing your story and inspiring others to be as brave as you.

What an amazing inspiration this boy is. I have a friend whose little one was just diagnosed with this rare disorder. I am proud of him now and will be even more filled with joy is he turns out to be as brave and strong as Matthew. Looking forward to following up on his progress.

Thank you for sharing your story

We are rooting for you Matthew, my daughter Katie is 14 and is living the same story

I have suffered for 50 years, and although clonazepam has relieved the shaking, it did not take take away the anxiety, the depression or the shame. I still cry because of the bullying that I went through...

Mattew all the luck. Please keep updating us about your surgery. Peace and love to you...good luck

I have just Today been Diagnosed with Myoclonus Dystonia! I am now 46 and had this all my life with it being picked up mainly at age 6, I do take Clonazepam tablets and have routine Botox injections every 3 months! We always were unsure of the Cause, we thought it stemmed from my measles injection, but I have been tested and have the gene 🧬 which causes it. Luckily I’m not as bad as this poor lad, but I’m bad enough! At least after All these years it Finally gives me answers as to what is causing my Myoclonus etc and also why I have suffered with Depression also. If anyone would like to chat just drop me a message, I am more than happy to discuss all my years of tests, treatments and how I have felt in myself as it is not easy living with this condition! Take care everyone x

I hope the DBS has helped you Matthew! You are such a handsome, brave and inspiring young man.

i have the same condition.....however i would never consider DBS even now when i can't work, drive, and generally care for myself.....the thought of brain surgery is too scary Brave boy i hope it works for him

i was told that i may have this disorder but not even close to as severe it’s just sometimes i will just start shaking or twitch randomly it mainly happens when i’m cold

I actually have myoclonic dystonia and i want to do that opperation! And Good job matthew :) cause i just know how hard it is to feed myself but i just take a medecine and its called zonegran and that also Help

Poor Matthew in the name of Jesus I pray u find piece n comfort

I have the same problem as him :(

Matthew I hope your reading this I have this just like you , your not alone I was diagnosed with what's now called myoclonus dystonia type 6 I promise you it DOES get better both with marijuana and age!!!! I was diagnosed young and have now had it for 21 years Once my teenage hormone levels dropped off around mid twenties the tics can get better Not always but try CBN , not yes I typed that right (CBD , CBG, and THC are wonderful too) but CBN is one of the only blood vessel and nerve tissue anti inflammatory As well as can repair the myelin sheath When it comes time for your back surgery because you inevitably will need one feel free to contact me on here I don't care if you just want to talk, need help , or hit me up years from now but please contact me and try RSO or full spectrum hash oil if possible I live in Illinois