I Have Mitochondrial Myopathy Disease

I STARTED ABOUT MID 20'S WITH SYSTEMS CONSTANT TRIPPING AND FALLING, WHEN I WOULD TAKE WALKS. THIS WHEN I STARTED REALIZING SOMETHING WAS WRONG REALLY WRONG.
I WAS VERY ATHLETE, IN HIGH SCHOOL I WAS IN GYMNASTIC, A RUNNER AND WALKED LONG DISTANCES.
BY THE TIME I HIT MID 30'S, I WAS FEELING MORE EXERCISER INTOLERANT. I WAS EASILY TRIED, MY LONG WALKS BECAME SHORTS WALKS AND GOING OUT BECAME A DREAD IT WAS VERY HARD TO DO ANYTHING ANYMORE.
THEN I WAS HAVING SPELLS OF TREMORS, IT STARTED WITH MY LEGS IT GOT SO BAD THAT I WOULD NOT GO OUT I FELT VERY EMBRASS AND UNCOMFORTABLE. THEN MY HANDS AND MY HEAD I COULD NOT TAKE CARE OF MYSELF ANYMORE, I NEEDE HELP WITH EVERTHING PERSONABLE AND NOT PERSONABLE.
THIS IS WHEN I WENT TO SEE A NEUROLIGIST ONE AFTER ANOTHER AND GETTING ALL KINDS OF TESTING AND NEVER FOUNDING ANYTHING WRONG WITH ME SO THEY SAID I WAS DEPRESS OR ATTENTION SEEKER OR I WAS DOING THIS TO MYSELF, THEN IT WAS ONE MEDICINE TO ANOTHER AND NONE OF THEM WORK. THIS WENT ON FOR 5 YRS.
FINALLY I SAID I WANT A SECOND OPINION. I MADE AN APPOINTMENT WITH A NEUROMUSCULAR SPECIALIST BY THE FIRST TIME I SAW HER, I HAD NO MORE HOPE WITH ANY DOCTORS.
TO MY SURPRISE SHE TOOK MY HANDS LOOK RIGHT INTO MY EYES AND SAID, I BELIEVE YOU AND THERE IS SOMETHING WRONG GOING ON, SHE TOLD I WILL HAVING A LOT OF TEST SOME PAINFUL SOME NOT.
ONE YEAR LATER I WAS SENT TO GEORGIA  THERE I WAS TESTED BY REMOVING A PIECE OF MUSCLE, BLOOD WORK  AND SPINAL TAP. ABOUT 6 MONTHS TO A YEAR MY TEST RESULT CAME BACK. I HAVE MITOCHONDRIAL MYOPATHY DISEASE A FORM OF MUSCULAR DYSTROPHY.
I WAS HAPPY I HAD A NAME THAT IT WAS NOT ME, BUT SAD BECAUSE I REALLY SICK. NOW, AND I WAS ABLE TO ACCEPTED AND MOVE ON. TODAY I AM A DIFFERENT PERSON BUT A HAPPY PERSON. I LIVE LIFE TO THE FULLEST.
ROSE
rosemosella rosemosella
51-55, F
2 Responses Jul 20, 2010

hi my name is holly i also have been on this journey and now am finding out what mito i have my family has a history of muscular dystrophy. ive been so sick and confused i really could use someone who has been thru this to talk to

Wow Rose that is an amazing and scary story. Good for you for living life to the fullest. I hope you continue your positive journey and can make more of us aware of this condition. Is it really rare? I have never heard of this before.