So, I've probably mentioned it once or twice but I was born with a health issue called Myoclonus dystonia also called Alcohol Responsive Dystonia. I'm just looking to vent here because I know that there is currently no treatment and really the only things that help are alcohol and benzos which I am really really trying to stay away from these days. I first started noticing it around 4th grade, my teacher noticed it too but thought it was a symptom of autism and told my parents. It didn't really get worse until I was about 18 and then when I would drive my neck would tense up really bad and I would jerk every now and then. I would smoke weed every now and then but it didn't help much and I discovered alcohol did a much better job at suppressing the jerks and twitches. I was hanging around with a group that would drink pretty much every day so obviously I drank every day with them. I didn't have many friends in high school except this one friend who was awesome and treated me like a human, so when I found friends in my new city when starting college I did whatever just to be with them. They were a bad crowd and I wound up getting my laptop, phone, ipod, clothes stolen. After a series of events I wound up in the hospital where the doctor mentioned how I twitched. I told him how alcohol made it go away but he just assumed I was drunk so I didn't notice. He prescribed me so many drugs but nothing worked, Neurontin, Klonopin, Ativan, everything. Since nothing worked I decided to self medicate again but being in a halfway house at the time and being a year away from legal drinking age I decided to go to cough medicine. This worked wonders getting rid of the twitches and jerks but totally wrecked my mind. I was cought and wound up in the hospital again where I was prescribed Invega. It took away the twitches and jerks almost completely, though through a bunch of misunderstandings with insurance I wound up not being able to afford it, the medication being $2,000 a shot. I went back into using cough medicine and wound up in the hospital again. Then I just wanted out so I just said what needed to be said and did what needed to be done and got out. I've been living mostly drug free for the past year and a half back in my hometown only rarely using when everything just gets too bad. The Dystonia is getting so bad now though, I walked out of a job because I was getting weird looks from all of my co-workers because they thought I was on drugs when it was this fucking disease. I can't even play the guitar around anyone anymore because it's just too embarrassing to have them see me twitching all over and moving my jaw around in weird ways. Hell, I can't really even play the guitar at all anymore. I really hate to go out in public because I know people look at me like I need to be in a mental hospital and I'm afraid that one of these days someone's going to call the cops and tell them that some wierdo's on the loose. I really feel like i have no hope left. I ditched those friends a long time ago and haven't been able to make new ones since, the only people who spend time with me anymore are my parents and my dog. I don't know what to do anymore, I want to be normal and be able to be in public without looking like someone who's about to have a mental breakdown but I know there's no treatment for what I have and the only things that help I can't keep using. What I really need is what's called Deep Brain Stimulation, or DBS for short. I've read about it and it sounds promising but I don't have insurance or any money at all to pay for it. I don't really have any plan right now for my future, because I'm so focused on just barely getting by today. What I want to do is become a web designer or learn some kind of programming language but I went to the college and I need to pay them back for the last time I went before I screwed my life up. I'm sure my parents are disappointed in me and they won't even acknowledge the fact that I have Dystonia. We go past the hospital where my neurologist was located and I mention that and my mom just says "Why did you need a neurologist? There's nothing wrong with you.". I also try to be calm around my parents and not twitch as much but it's getting so bad that even when I'm sitting still I can't hide it because my foot or leg or arm or neck will just jolt occasionally. I've been looking for a new job but as soon as the manager sees me they assume I'm on drugs and I never hear from them again. Sorry for being so long winded, I just needed to get some things off my chest that have been bothering me. You're the only people close to friends that I have left other than my family and you've been great since I came here like 4 years ago. If you read this then thank you, it means alot to me, I would be very open to suggestions about what to do next because honestly I feel like I've hit a wall. And sorry if there's typos, I'm typing this on an iphone.
Hey - I want you to know you're not alone. I deal with myoclonic tics as well, with a number of other neuro issues and can't get a diagnosis. One of my brothers uses alcohol as his treatment because, like you, the meds do nothing. I'm not sure how Minnesota is as far as the Affordable Care Act; Kentucky has an amazing system, but just across the river in Indiana, my girlfriend is struggling to get insurance. Please look into it, though - everyone should be able to get the treatment they need affordably. Since you have a diagnosis and are pretty much unable to work until you get this treatment, maybe check into applying for disability? At the least, that would provide insurance as well. It can be a fight, though. Beyond that, I really wish you the best. I know what it's like to feel like your body is betraying you and also - because it's not "normal" to have people think you're insane. (*hug*)
driedroses makes some good points. What also occurs to me is that whilst you have clearly looked in to things, your parents have no. clue. And, frankly, they need educating because if they were singing the same tune as you I am sure they would pay to get you to the best expert in the required field without a second thought. Do they really understand how this affects you daily in social situations and holding down a job? Maybe you could craft a letter to them if they are difficult to talk to??
