Even when it rains there is rainbows!

Okay So... today is the second day of massive headache land.  There is so much pulling going on behind my ear.  I keep getting ringing and then cant hear on the right side and behind my right eye there may be a gremlin living in there..

Applied at Mayo Clinic yesterday, they called this afternoon saying they couldn't accept me because of my insurance.   Medicare only pays 60% and I would be responsible for the other 40% then they said I would have to petition for that 60% since I am on an advantage plan.  I need an adultier adult... someone to teach me about how to work these things I just don't understand.  It took them less than 24 hours to look at my case.. I cant get ANY answers back from insurance or doctors that fast... I really believe they may hold the key to my success. I JUST NEED IN.  So that was definitely the rain of the day.

Lets talk about the rainbows.  -- My best friend. Seriously.  You know when you have a friend who is just the most amazing person ever and they do or say things that always restore your faith. He is it.  Sometimes I cannot express enough how good this guy is.  He called me over today says he's got something for me and he got me this.. https://www.liftware.com/ I shall try it tomorrow with cereal!
Its a pretty big F'n deal.  I am SO Blessed with so many beautiful souls in my life.  He is just someone that is SO good and caring to those around him.  Thank you Kenneth Creech.  I can't thank you enough for the friend you are to me.

I was accepted into the Drug trial for Xyrem.. just waiting to hear back now on insurance coverage for that... if it doesn't though they said they have other ways to have it covered.   I may not get to start that till fter the first of the year though since its going to require a hospital stay.

Me Vs. Biscuits

So Much to say today lets start with a shout out to Facebook who helped me meet a lady named Mary who is going through what I am and we talked and compared stories are problems are so much alike right now its not even funny. I don't mean to sound thrilled about that because I am not happy someone else is suffering, but the things I thought no one else would get she does... so that's kind of nice.

So I told you all I hate videos of myself.. and I DO.  I am realizing they need to be taken though so people can see.  Sometimes I cry when watching them because I just can't stand to see myself.  If I don't see it I don't know how bad it looks to others.   If I don't show you how will you know though?
It is MUCH easier for me to eat with my fingers than utensils.  So this is today.

Okay to tell you what this is like.. its those movements you can see..  but what you can't see are the muscles that are also twisting while jerking like this.  Sometimes getting dressed and feeding myself feels like I just ran a 5k.  there is this picture that goes around facebook of this woman  with her toddler... (this is not my picture,I do not own it I just took it off a Facebook for an example)

Anyway this is what it is like just as I get something under control Dystonia is like NOPE and just goes in and messes stuff up.  I was doing GREAT on my heart medicine.. now there is so much pressure from my muscles bearing down on all my organs that my heart rate BARELY goes under 130 most days.  Usually if I am doing anything its about 140-155.  My organs are too stressed my stomach HURTS ALL THE TIME.  Like someone is squeezing it.  And my blood sugar no matter how good I am is still higher than is should be because my body is stressed. My organs are stressed.   So even when I have done everything I should all those nicely folded piles are being ripped apart like Godzilla.  Maybe I will name my dystonia that.. Hmmm   I just want things to relax... I want my hair and skin to look pretty again...right now I look and feel like a small mangy animal.  :P 

Today is blessed, but I really need some help.

Today is a beautiful day.  I woke up and I am alive and kicking.  So I am grateful.  But today I am overwhelmed.  Today I am stuck.

Here is a current list of KNOWN medical issues.

*Myoclonus dystonia
*Type 2 diabetes
*high cholesterol
*metobolic syndrome
* Unknown bowel problems (some due to the M-D some think I may have IBD) But there's scarring in my intestines.
*PCOS
*abnormalities in my red blood cell counts.
*Tear in rotator cuff
*Hital Hernia
*Fatty Liver
*Kidney stones
*Migraines
*Depression, Anxiety, OCD
*Tachycardia
*There's a slow growing lump on my thyroid. -- But not thyroid disease.. (so they think)


And if someone tells me that these can be cured by changing my diet I will hunt you down and bite you.  I Don't eat fast food barely ever.  I eat mostly Vegetables and meat.  I eat a TON of salad and I eat fruit.  The only down fall is I drink a soda or 2 a day.  Like that is literally the worst thing i put in my body.  I am human sometimes I give into a sweet treat but that's far and few between, and lately its not happening at all because I am MISERABLE.  Anyway..

These things are happening while most of these things aren't bothering me the last week my heart rate and guts have for sure been and issue, and my movements just keep getting worse and worse.

My doctors take SO LONG to do anything.  My caseworker is TERRIBLE.  I don't know why I have her she literally tells me every time I call her that she doesn't know what to do about whatever the problem I am calling her for.  Most commonly pushing through referrals.  This is her JOB mind you. I cannot request a new one from anyone but her according to the mercy care supervisor.  I have to call my caseworker tell her I want a new one then wait 2 months.  SURE let me just do that and have that woman do even less than she already does.  Not to mention she is just highly offensive in the things she says sometimes.  So great she is useless. They send me letters telling me all the time about how I am classified under "catastrophic care"  But then she tells me I don't qualify for long term care because I can still walk and speak.. what?  And hello...is questionable if you can call whats coming out of my vocal cords some days as speaking.

My Neuro is good,  But hes hard to get into see and sometimes I feel forgotten about but none the less I like him.  I also Like my PCP but hes also impossible to see and hes a very far drive for someone that cant drive on the bad days.  All the other doctors don't communicate at all with each other, and honestly some I feel have straight up given up finding answers because it wasn't and easy answer.

I think I could deal with all of these things individually Except for they all make the biggest monster unbearable.  My Myoclonus is out of control.  I am exhausted. I was waiting for an allergist referral I finally get it and call them.  they had me send over the materials I need tested to have the DBS put in and told me I may have to find some of these myself.  WTF?!?! Please tell me how am I supposed to find some of this stuff... I don't think I can even pronounce all of it.  So Okay.. fine I take a deep breath.  Medtronic does NOT supply allergy kits anymore for their devices... IDK why its really terrible and I am just astounded by the whole mess.   They had once told me they could make a device not coated in the silicone I was allergic to they could cover it in polyurethane but they then told me they wouldn't because it cost to much to go through trail with the FDA. So fine.  Now it's 10 years later they want to retest me to see if I still have the allergy because DBS Is still my best shot at a "normal" Life.   Then the lady on the other line drops the other bomb.  My insurance probably wont cover the testing unless I have a anaphylactic shock reaction to the material.  I'm sorry but WHAT planet am I on? My body rejecting a medical implant isn't enough?!  I said so what are my options? she says that if I have the Implant and start having a reaction then seeing them would be covered... Uhhh.. super.   Or I could pay for it out of pocket.  SO I am probably waiting another few weeks to even see these people just for a consult because they have to find if they can find the material and if they can't then I have to.  THEN I have to wait and see if my insurance will or will not deny it. (at this rate I am going with will because they are still denying my heart medicine)
OR Option two I could say F- this and go ahead blindly and hope that they will cover another DBS that I will probably have an allergy to and just hope that they have a way to treat that once it's in.

I NEED HELP. I am tired.  I am tired of fighting... and I feel like I am drowning.

 I want to get into the Mayo Clinic.  They would look at all of me as a whole and not each problem.  They don't accept my primary insurance though.  They accept my Medicare but I have been told its impossible to get in.  I don't have a clue how to even start to go about that process and asking my caseworker would be as helpful as asking my dog.

Other things people have suggested to me is to get a Doctor in the UK to see me they are far more advanced in M-D than in the states.  ( I also need genetic testing that my insurance does not cover, as there may be more than one underlying condition)

Going to a news place and getting them to pick up my story.  ( I don't know what to say to anyone or how this would help except maybe a doctor would say I would love to take on your case and figure it all out and maybe be my godsend)

Going to Medical schools and getting them to take on the DBS issue since they are doing experiments all the time getting them to help figure out a way my body could handle the implant.

These all sound like grand ideas but I don't know where to start or how to with any of them.  So I am asking for information, names, places I could write... ANY information.  I am willing to do the work.. I just don't know WHAT to do.  Who to contact, or how.  You can comment here.. Or on my Facebook if you have ideas or Write to me at my GMAIL at Caseynoe@gmail.com

Thanks for listening.

More Deep Brain Stuff..

These are more pictures of the original device and surgeries. Looking at these I cannot believe I am considering this again.. but then I think of all the possibilities if it goes right this time!!!

Also I was explain to people on a dystonia website today how I was told basically what is wrong and why so here is my very rough drawing to explain it to others also.   

The protein is what mutates.  Without enough of it all your brain signals don't go through correctly.  they get mixed up or crossed.  DBS sends electrical current through your receptors and helps transmit from one to the other the signals that the protein is missing.  

I little bit of humor for a terrible day

So M-D could be the best diet plan ever.
Today started out okay but my heart rate kept rising even with medication I was easily in the 140's
O2 is a little low also.  So I feel pretty terrible.  The past few days no solid food has been staying in my body so tonight I thought Okay.. I have to eat something. Diabetic and hypoglycemic... Something other than Gatorade and Toast has got to go in my body.  So I tried chicken soup.  I am for sure positive I just burned off more calories trying to eat this soup then I actually consumed.  I am also wearing a good portion of it.

This really could be the best diet plan ever... Haha

Tomorrow will be better!

Please don't stare.

Did you know that while my type of dystonia is very rare that dystonia itself is the 3rd most common movement disorder? But most people have never heard of it, crazy right?

If I go into a doctor and they ask me how to spell it, then say they have never heard of it.. (and this has happened) I am polite but I immediately find a new doctor.  Or if I can sit there and whatch you google it... Yeah finding a new doctor.  Its sad but these things have happened.

Last night was difficult for me.  My chest was really tight my heart rate was at 145 and my o2 was down to 94 at points, but I feel much better this morning compared to then.

Things I want to talk about today are my experiences when strangers don't know whats wrong.  MOST people stare.  Some make sarcastic or nasty comments.   When I was in school people would call me a drug baby, or tell others that I myself was taking drugs.   Please don't stare.  It makes it SO terrible.  You feel ashamed of yourself and it makes anxiety so much worse, and the quick change in emotion can make the movements so much worse.

When I was in college I was in a library studying and my movements were particularly bad that day.  I had a guy come up to me and he said: "I don't mean to be rude so I hope I don't offend you But I have been watching you a few minuets and I was just curious as to what is wrong?"  A few years later I was in a restaurant eating and the same thing I was having a particularly bad day and a waitress stopped and she just asked if I was okay.
I don't know about anyone else.. But to me these were kind acts. You asked instead of just staring..or assuming, or being freaked out.  I felt grateful for those people.

I am self conscious, but far less then I used to be.  When I was younger it was HARD for me to make friends because I came across as rude or standoffish.  I preferred not to speak.  Sometimes the M-d makes my speech VERY hard to understand.  I just didn't want people to stare.  I preferred to not be noticed, to not stand out.   As I get older I care a little less about what people think because if they are going to be that not understanding they probably shouldn't be a part of my life anyway.  I love the invention of texting.  I HATE talking on the phone.  Most people have a hard time understanding me.  Automated systems don't even pick up what I am saying.  Those closest to me have learned to speak "Casey", and know what I am saying.  My partner can even sometimes just determine hand gestures LOL and will make most of my calls for me or talk to people on the fly after I hand her the phone because someone has asked me what for the 3rd time. At my old Doctors office I there was a receptionist there that could NEVER understand me and it never failed she would just eventually hang up on me.

I don't do well in large social situations they make me uncomfortable.  Anxiety is a beast especially with things like M-D because you are always worried what people are thinking about you.
I try now not to care so much but there are still days when I just can't be out in public.  I can't even watch videos of myself because I hate what I look like.  My partner and I took a trip and swam with sea lions I loved the pictures because they looked pretty and I looked normal.  I didn't want the video though because I can't stand to watch myself.  It's painful.  These are things I am still working on.  One of my best friends had a wedding back in August, and that was also difficult. While I thought I looked nice, I had no self confidence issues about that. I had a very hard time being part of the wedding party because Of my movements.  I wanted to cry because I felt like I ruined parts of her beautiful wedding.  I didn't want to miss out on such a huge part in her life though so I did it. As I got up to the front of the wedding party My dear friend who has always accepted me just as I am from the start told me just to breathe I did great and I was with her now so I was fine. It was painful and I had a moment of self hate afterwords. Eventually I would get over myself and realize it doesn't matter.. I was there for a beautiful moment for people I loved, and that is all that needed to matter.  I am lucky I am blessed with so many people that love me so unconditionally.

This is where I end today. Everyone be Blessed!

Never Quit!

So in 2012 Things changed for me because I went on disability permanently.  That was hard to accept.  It did help with the stress on my body but it was really hard on my emotional self.   My OCD really started to act up.  I lived with other people at the time and it was too much when Others left their things in spots that I thought there should be nothing in.  I would obsess over order and have complete anxiety in every social situation.. where people staring at me? judging me?   It was terrible.  

It felt like I couldn't breathe.  I started having heart palpitations and would become so moody I was impossible to be around.  So at the end of 2012 I was put into a Mental health facility to change around my mood stabilizers again.  I was not suicidal but I was for sure in a  state of distress.  I asked to be put back on a Drug I had been on previously but that they had removed thinking I needed something stronger. So I went back on Trazodone. I have been on this since.  It helps me sleep and keeps the edge of depression off.  It is REALLY hard to sleep with M-D.  I think for me this drug has been a miracle in that aspect.  In 2013 at some point I went into a point of remission.  

Sometimes this happens for unknown reasons for patients with dystonia.  It didn't for me mean that my symptoms were gone.. but they had gotten better... more manageable.  2013-and the beginning of 2014 were pretty good.  I have very few intolerable episodes and I was doing more I was being more social I met new friends. Things were pretty good.  By the end of 2014 though things had begun to change again, this time not for the better.  I started getting the migraines back.  I started getting more of the muscle spasms and muscle pulling.  Most of the time people cant see it happening but every now again it will be severe enough it will start showing.  On this day I was able to show you in my legs what was happening.  While the video was of my legs that morning I woke up with this happening in my legs shoulder, neck and behind my ear:

The myclonus began to become so severe that my movements also caused me to tear my rotator cuff in my right shoulder. This was causing me a substantial amount of pain.  I saw a surgeon for it and he had told me it wasn't torn all the way through so that was good, he also said surgically repairing it would be pointless because with my movements being what they were it would be probable to happen again.  So I started physical therapy instead.  That was a little helpful, but that would be short lived.  My Physical therapist was great she really did everything in her power to help and some days it did.  She was always amazed when she saw me when they started working on my muscles she told me she wasn't sure how I was still functioning.  

She said she had seen people in there with much less going on who could barely move.  I just laughed.  Simple truth is... I have never known anything other than this.  So you keep going.  You suck it up, you try not to complain and you keep living.  I was seeing a pain doctor also at the time and on narcotics that I would soon after stop.  They made pain better short term but they were tearing down my body, it wasn't worth it.  I would still go in for trigger point injections where they would inject a particularly twisted or spasm muscle with lidocaine and muscle relaxant.  I could usually get about 8 injections at a time. That cant be done as often because it breaks down the muscle, but it would give me short term relief of the pain and migraines.   

*side note this also reminds me that for a few years I did Botox injections.  This would kill over active nerves and slow things down. (or that's what its supposed to do)  But because There was so much of my body effected that even with the max of 41 injection points I was only getting relief for maybe a week and not much relief to boot.  They could only do botox every 3 months though.  So I stopped that also.  

This year.. 2015 - all hell has broken loose in my body.  I had a hysterectomy at the beginning of the year that triggered some extremely bad storms that my partner and nurses got on tape. These are personal in nature as I am trying to sit down to go pee, you cant see anything though.  So.. here is that: 

This year has been VERY rough for me.  After they sent me home from the hospital I was unable to walk on my own for a few days.  I could barely move without a storm starting again.  I decided at this point I was going to try Medical Marijuana.  So I started using Cannibus oil and THC gummy bears.  I tried a few other oils as well.  They made me tired relieved a little bit of pain but they were making me depressed.  So I stopped that as well.  I have been having a lot of chest pain this year that landed me into the cardiologist. They said the electrical part of my heart isn't working properly but that it was nothing life threatening.  They started me on some medications to slow my heart and that was working but then the chest pain came back 10x worse.  I was also having lower back pain and burning in my legs.  I was in the shower one day and noticed I had loss of sensation in my feet and legs.  Not completely numb but There was definitely a difference.  I landed back in the ER. While in the ER I started having storms again.  They ran a lot of tests and Pumped me full of Valium.  That was a god send.  

The spasming stopped imminently. The burning stopped and so did my chest pain. Neuro came down and told me what I already knew that I was having a severe flare up.  What I didn't know was how bad it was.  My trunk muscles had been compressing my bowels for so long it had caused me to have severe constipation. It was also causing angina. Basically my muscles are squeezing my chest plate so it's putting too much pressure on my heart and lungs.  Makes me feel like I am having a heart attack.  I went home with Valium pills and saw my regular Neuro the next week.   There was bad news and good.  the Bad being that I still have a decline in stimulation in my feet, they don't think it is permanent they just think its due to my body being so constricted.   Bad news also being that they really don't have an idea on how to long term solve the constriction and with my Bowel not working as properly I am having a hard time actually keeping enough Valium in my body.  They thought they would have me do valium injections at home but they determined that filling the vile would be too difficult.  

So they started on a rectal gel.  Yes that is as awful as it sounds LOL. In the mean time I am going to see another allergist.  They are testing me again for allergies.. they want to try to put the DBS back in.  So I will be doing that.  They are also submitting to my insurance to try a trail of Sodium Oxybate. (basically known as the street drug GHB)   Because in other studies it has shown to calm Myoclonus.  The downfall is it also can cause seizures.  As of today the Valium works some days.. some days it doesn't.  I am considering trying to get into the Mayo Clinic although I do the the best Neurologists in the country for movement disorders at Barrow's.  I have even considered trying to reach out to doctors in England seeing is someone will take on my case, they have more research there about my disease.  Some days I am too tired to fight honestly. Some days I feel like doctors are a waste of time. Those days pass and I keep going.  It is really hard to explain to people how much of your life is affected by this. Its hard to tell people the amount of pain you are in.  Even those closest to you.  You don't want to be the downer you don't want to have people look at you differently.  Its hard to make then understand that just because you aren't crying on the outside doesn't mean you aren't on the inside.  

I smile... I carry on. Honestly there are days I DON'T WANT TO.  But I do.  Because there are people that love me.. because my presence on this earth is to learn about things. Even through suffering I still see good.  I grieve.  I grieve for the loss of a day that I couldn't do much but sit around.  All the wasted time I grieve for.  I grieve for what I want to be and what I am not. Please don't mistake this for feeling sorry for myself.  I certainly don't.  I am  not on deaths door,  I get to breathe another day I get to still find happiness I get to try to brighten other peoples lives with happiness.. I volunteer for A place called Crops of Luv. (https://www.facebook.com/Crops-of-Luv-112138497486/) Because I want to fill this world with Love and learning.  Thats why I took this step out to make my life public. I know I am not alone.. And I want others out there to know you are not alone.  Fight your fight.  It is not gods curse.. or the devils infection.  Whatever you are fighting its just your path.. It is a path that will teach someone something and we are always meant for far greater things than what we can even comprehend. 

 I ask for the people in my life just to understand.  Understand that though I may smile some days I feel like I am at a breaking point, understand that though I may not ask for help I may need you to offer it because I am too proud to ask.  I am stubborn.. I will almost never tell you I cannot do something.  My parents did not raise a quitter.  Be sympathetic but never feel sorry for me.  I don't need pity...sometimes I just need understanding.  My best friend Kenneth he is amazing.  Sometimes us hanging out is just me laying on his couch and chatting about stuff because doing more than that is too much.  He often picks me up because he understands that driving may be too much.  Let me vent if I need to.. And when I cry.. let me.  Don't try to tell me that its not a big deal or that it will be fine. Because at that moment it is not fine.  Just understand. Understand there will be days when I wont smile.. when I cant force the happiness.  Understand that you don't understand this battle at all.  Though a lot of you understand a lot of it, you just cannot until you live with this monster inside you.  Don't assume I am not disabled because I still laugh.. because I still walk, because I will push myself and do things. EVERY SINGLE DAY is a battle. There is NEVER a day that my pain level is below a 6- and that is the best of the best.  Most days I sit between an 8-10.   I Say these things for the people I know.. But I say them also for the people I don't for the people on the outside of watching someone else struggle.  Love more folks... and Love harder.  Inspire healing, help and give. 

Tell your story, tell my story, teach people, just don't give up.  

This ends my entry for today.  

"I have had brain surgery...what's your excuse?"

So lets continue on... in 2005 I had the first of SEVERAL DBS related surgeries.  Now anyone that's gets the surgery today is lucky.  Back then they didn't have the technology that they have just 10 years later.  Now it takes an hour or two.  then my friends and family had to wait almost 9 hours. The lead placement was a piece of cake.  This was the first surgery.  My head didn't hurt very much at all.  

The second surgery a few weeks later was The tunneling and battery pack placement however...well that made me cry.  A lot.  I don't tell people this to discourage them.  Because if it works for you I promise you the pain will fade. (and they give you plenty of pain meds to get you through the worst of it) The batteries are SO much worse because they have to rip your muscle.  The actual incision is only about the size of a penny but they rip the rest because they need it to scar.  The scar tissue is what keeps your battery in its place. At the time of my surgeries they thought the best place would be to implant in the hypothalamus, they now think however they should be placed in the  globus pallidus. (A.K.A GPI) I had the first of my complications start about a week after I got out of ICU. I spent almost a week in ICU because I don't handle IV fluids well they make me terribly sick.  

Anyway, when I got out my left battery had dropped into my breast. It was causing the worst pain I had ever had in my life.  Every breath I took felt like I was being ripped open.  I couldn't lay down because it felt like I couldn't breathe.  I had to go back in so they could sew a pocket around my battery.  Then in 2007 I had a lead break on the right side that had to be replaced.  They aren't sure why it had broke but I am pretty sure its because I had been violently ill the weekend before and all the vomiting was just too much pressure, as the wires on that side of my head sometimes felt like they were pulling too tight from the start.  In 2008 I had a battery die and had to go in for a replacement.  A tiny tiny piece of gauze was caught in my stitching and became a infection.. So I spent another 5 days in the ICU a few weeks after that replacement.  

Up until this point I had shown some improvement, not so much with the Myoclonus, but with the dystonia.  I didn't have as much pulling and spasming of my muscles.  It wasn't really the results I was hoping for but I was never sorry I had gotten it.  I would have wondered my entire life had I not.  In 2010 the fevers started.  I would have fevers and rashes that would come and go I started getting so sick to my stomach I was dropping weight and I knew something was wrong. They kept telling me it wasn't anything to worry about.  Until one night I went to the Emergency room.  I had had migraines for about 6 months when one night it was so bad I couldn't take it anymore.  The ER ran test and admitted me because my white blood cell count was 3x what it should have been. They quarantined me and brought in infectious disease.  They didn't know they even consulted with the CDC.  Someone suggest an allergy test.  

So a week in they were taping me up with all kinds of materials and pumping me full of benadryl.  Large doses of benadryl make the myoclonus worse.  I was MISERABLE.  Turned out though I showed an allergy to silicone.  Silicone coats everything the DBS is made out of.  They took me in for surgery and took out the batteries first.  They wanted to see if taking out the largest component would be enough to calm my bodies rejection of the material down.  I was sent home and things got a little better for a while.  But then the migraines started again.  And I ended up getting lumps under my armpits.  Antibiotics didn't take care of them so they went int for another surgery in 2011 and biopsied the largest of the lumps on my right side.  

They were fibrous masses that showed signs of staff infection and silicone material. My body was still breaking down and rejecting the leads and wires.  So a few months after this surgery I had another to remove the rest of the DBS. I cried a lot those few weeks before and after.  Some out of happiness that now the fevers and sickness would stop.  Some out of depression that my best hope for relief was the one thing my body would absolutely not allow. 2011 Was a hard year for me.  It was a time when things got worse for a while after the last surgery I was having migraines still because the dystonia was acting up so much.  The muscles behind my hears would pull so tight i would just have ringing in my ears.  I was in College and I had managed to keep up with my classes.  I was also working still..but after the last surgery I was out for too much time.  The job I had at the time I couldn't be in the office with open wounds.  MRSA was a problem in the office.  I would eventually quit that job, I couldn't be at the office enough to be effective and the stress level on my body was too much. So I thought I would just continue on with school but even that had become a struggle from 2010 -2011.  

I was only 24 credits from my associates when I quit school.  Things they don't tell you because they aren't as common but my memory changed after brain surgery.  A LOT.  I have HUGE gaps in my long term memories.  People tell me things that have happened and I almost just have to believe they did because I just don't know.  My short term memory is also not as great.. I struggle a lot with it and also trying to put sentences together. Sometimes I have sequence problems.. I am not sure what order things have happened in past events.  Numbers were never my thing.. But math became IMPOSSIBLE.  I would study with tutors for HOURS before test and still fail miserably.  

MY frustration grew and I reached the limits of my patients.  My myclonus was out of control.  By the time i would get to class I would be exhausted from all the involuntary movements and the weight of my book bags.  I sadly.. was done.  This was just one part of my life though.  I wanted to study the brain and be a physiologist. I had dreams.. But those dreams needed to change. They had to adapt just as I had to with the new things that were going on with my brain and body. In 2012 I started not meeting as many of my neurological markers that I should have. I Had started working part time and remember so well the day my Neuro told me It was too much stress.  That it needed to end.  He said and I quote "What is happening to your body is the equivalent of someone being in a car accident EVERY week" 

The jerking of the myoclonus was pulling my muscles into spasm while the dystonia was twisting them into knots.  I Continued to work I little longer I REFUSED to give in...but the migraines started again and I was missing too much work between them or just having too many involuntary movements to be able to safely drive.  I had been on disability from 2005 till 2012 with stipulations that I could work. 2012 was the last time I worked.  I was sad to lose that independence. My body thanked me however.  I started sleeping better and the movements slowed down. I was thankful and so were my muscles.  Things would change though.. But this is where I will end this today until  the morning. 

 One last thing I think is of importance to take note in though.. While a large Majority of patients are people with dystonia affecting only one or two parts of their body.  I have also the rarer of the types that affects my entire body.  Mostly my trunk, arms, neck and head. But really bad days will include my legs also.  This makes treatment hard because they cannot focus on one muscle group. 
.

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.