This is where my story starts..

I guess the best place to start would be to tell you a little bit about myself.  I am a 34 year old female living in Arizona.  I was officially diagnosed with Myoclnus Dystonia when I was 22, but that is not where my journey started.  First let me give you the official terms of this diagnosis: 

Myoclonus-dystonia is a movement disorder that typically affects the upper half of the body. Individuals with this condition experience quick, involuntary muscle jerking or twitching (myoclonus) that usually affects their arms, neck, and trunk. Less frequently, the legs are involved as well. More than half of affected individuals also develop dystonia, which is a pattern of involuntary muscle contractions that causes twisting and pulling movements of specific body parts. The dystonia associated with myoclonus-dystonia may affect a single part of the body, causing isolated problems such as a writer's cramp in the hand, or it may involve multiple areas of the body. Rarely, people with this condition have dystonia as their only symptom.

The movement problems usually appear in childhood or early adolescence, and myoclonus is typically the initial symptom. Myoclonus may be triggered by movement or stimulation of the affected body area, stress, sudden noise, or caffeine. In some cases, the myoclonus gets worse over time; in other cases, people experience a spontaneous improvement (remission) of their symptoms. It is unclear why the movement abnormalities improve in some people but not in others.

People with myoclonus-dystonia may have an increased risk for developing psychological conditions such as depression, anxiety, panic attacks, and obsessive-compulsive disorder (OCD).

Mutations in the SGCE gene cause myoclonus-dystonia. The SGCE gene provides instructions for making a protein called epsilon (ε)-sarcoglycan, whose function is unknown. The ε-sarcoglycan protein is located within the cell membranes of many tissues, but it is most abundant in nerve cells (neurons) in the brain and in muscle cells.

SGCE gene mutations that cause myoclonus-dystonia result in a shortage of ε-sarcoglycan protein. The protein shortage seems to affect the regions of the brain involved in coordinating movements (the cerebellum) and controlling movements (the basal ganglia). Thus, the movement problems experienced by people with myoclonus-dystonia are caused by dysfunction in the brain, not the muscles. People with this condition show no signs of muscle disease. It is unknown why SGCE gene mutations seem only to affect the brain.

(http://ghr.nlm.nih.gov/condition/myoclonus-dystonia)

So that is what it is.  So let me tell you what it is in my words... A serious struggle some days.  I started showing symptoms at the age of two or so. As soon as real motor skills started so did it.  at the age of 5 or 6 they started taking me to specialists and they started the testing.  They did sleep deprivation tests, MRI's, medication trials,  they poke they prodded they tried to diagnose and learn.  Though my parents desperately wanted answers at some point they said enough is enough.  I think it was when they had me on such high doses of Valium as a child.  I wasn't having seizures but the moments are so bad sometime that they felt like it.  A doctor in California told my parents that he thought I had something called Familial Dyskinesia, and they talked about the deep brain stimulation way back then.  It wasn't anything they were doing in the states yet but he told my parents to take me to see a doctor in Dallas.  My mother couldn't stand anymore of the guess work and all the trails they were putting me through.  I was already struggling in school. I lagged behind my peers in motor skills and I was being tormented by the other children.  I was also tired ALL the time.  She chose to take me off the drugs, and only deal with doctors when it was needed. She opted for therapy at school.  They taught me how to write and hold things better, it got a little easier but I would never be as normal as my peers.  Schools made accommodations but I fell behind a lot because I struggled with motor control and also the emotional turmoil of the things that having M-D causes.

Things didn't change much as I grew I just learned to adapt.  I have NEVER been able to carry a glass of water or drink from a cup. I could never carry a lunch tray and any sport activity was difficult. Eating soup sucks. Still does. My handwriting is.. well I could have been a doctor. Hahaha Depression, anxiety , and OCD  set in when adolescence did.  Anyone who will try to tell you that those things aren't really a medical problem has no clue what they are talking about.  My brain literally does NOT make enough receptors to keep me happy- or sane sometimes.  Things are mutated in there.. hormones kicked in and so did all those things.  I would obsess and worry about things that were so small.  Any form of rejection weather it be by a friend not wanting to spend the night or later in life a rejection of a romantic interest would make my anxiety run wild.  Depression was a monster.  I would be anxious and dead inside all at once.  My brain wasn't making enough chemicals to cope with those things.  It used all it had just to try and give me decent motor skills and keep me talking, walking and breathing.  I still had no clue to the extent what was wrong with me.  I tried to commit suicide for the first time when I was 19.  I am so thankful I made it through that time in my life.  At the Age of 22 I saw a Neurologist here in Arizona after about 15-20  minutes with me she told me "I know exactly what is wrong with you.  You have a very rare condition called Myoclonus Dystonia." Its hereditary both my parents carried the gene my father passing on an active gene.  I was only one of 5 people they had documented at the time.  They ran some tests they started me on more medications.  I have been on Literally EVERY drug that they thought could remotely help, anti seizures, vitamins, diets, muscle relaxers, sleep medications, anti-depressants, anti-anxiety.  Every class of medication you can think of.  Things people haven't heard of.  I would get really sick from things, or they would send me into myoclonic storms.  They would knock me out for days. there is FILES AND FILES full of things I was desperate, but I had no relief. In 2002 I tried again to commit suicide after one of the drugs sent me into a hard downward spiral thankfully this would be the final time this would happen. In 2005 they had recently just approved Deep Brain Stimulation (DBS)  for movement disorders.  I was one of first people to get the surgery with my condition.  (at least that we know of in the U.S.) 

This I know is not a good ending point, but I am ending it here for tonight I will write more tomorrow.. Today has been a rough day and medication and sleep is needed.  Thank you for listening and following my journey.