I Have Melas Syndrome

MELAS Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with MELAS Syndrome. You're not alone. 72 People

    20 Year Old With Melas

    Hello my name is Nathan, I live in southern California. I was diagnosed with melas somewhere around 6 months old. I had seizures all through my first year and had a less than ten percent chance of surviving past year one. Around year one my stroke like symptoms stopped, and I...
    melasmelas melasmelas
    1 Response Oct 11, 2013

    My dad was recently diagnosed with MELAS.

    He is 48 years old. He has been in and out of the hospital due to seizures and what we thought were strokes. He suffers from hearing loss, weight loss, cramping, diabetes, epilepsy ( frequent seizures), and stroke like symptoms because of MELAS. We didn't know what was going on...
    ering08 ering08
    26-30, F
    2 Responses Sep 1, 2014

    My Experience

    I had 2 strokes on my right side of brain and a seizure when I was 30. I had aphasia and had a year of speech therapy. I had another stroke 2 years later on my left side of brain. Doctors had no idea was causing it. I have had migraines since I was 9 years old. The ones that you...
    Smrtmom4 Smrtmom4
    41-45, F
    Feb 9, 2013

    Age 25 With Melas, Would Like To Speek To Others About It.

    hi im 25 years old and i have melas. i have a few symptoms of the ilness all ready. my mum passed away just over 10 years ago, when i was 14 and she was 41. it was melas that caused her to pass away. would like to hear other peoples storries and what there symptoms are, as ive...
    winnie08 winnie08
    22-25, F
    9 Responses Oct 26, 2011
    fnf28 fnf28
    31-35, M
    2 Responses Nov 10, 2015

      My 8 year old daughter has just been

    diagnosed with Melas after her first episode. She encountered loss of sensation down her right side, but this has now returned. We are going through all the steps that the hospital recommend, but we are so worried what the future will hold. We are just looking for a little...
    21sienna 21sienna
    46-50, M
    Mar 31, 2014

    Son Age 3, Probable Melas

    My son age 3 was just released from a childrens hospital 3 days ago. He had a stroke like condition. They suspected Melas. I have done ample research in the last few days and I see how he fits the diagnosis in alot of ways. But there are some things that don't add up so I was...
    Leesa77 Leesa77
    41-45, F
    2 Responses Jul 10, 2012

    My 27 Year Old Son Was Recently Diagnosed With Melas

    Thanks to everyone for sharing their MELAS experiences. My 27 year old son "Skip" first presented with MELAS this May. He was in law school at the time and suddenly had a terrible headache and trouble reading and writing. An MRI confirmed a stroke to the left temporal lobe. We...
    jillhana jillhana
    Oct 9, 2013

    My Son

    My son has had leaning problems all his life but 2 years ago he had stroke like symptoms, the Doctor is now testing for Melas Syndrome. I have so many questions,
    Andrewpmarshall Andrewpmarshall
    1 Response Apr 29, 2013

    I'm Still Undiagnosed But Strongly Suspect I May Have Melas.

      I'm 56 years old and have been sick since the age of 15 with unexplained proximal muscle weakness in my arms and legs and other problems.  I have been disabled since 1995.    Since age 15, I've had severe exercise intolerance.  It caused me to fail P.E. in highschool...
    ginaalexandra22 ginaalexandra22
    2 Responses Nov 10, 2011

    Sadly My Mum Just Died Of Melas

    My mum was first diagnosed at the age of 54 after having her first stroke like symptom. She had had diabetes and had started to lose her hearing around the age of 30. she conintued to have increased stroke symptoms but without major episodes as such. Sadly at the age of 58 after...
    loubR loubR
    4 Responses Jul 13, 2010

    My wife( 36, a twin, living in NZ),

    has MELAS. Hearing loss declined between 2007-2012. Had first grand mal seizures in 2012, diagnosed with mitochondrial disease/MELAS. Sadly had more seizures and stroke-like-episode in Aug 2014. Spent 7 weeks in hospital and Rehab. Has asphasia having to re- learn how to read...
    Richeste Richeste
    36-40, M
    1 Response Nov 29, 2014

    Finally An Answer

    I have had test after test and finally had a muscle biopsy and was told I have Melas.i want to share knowledge with others that after hospital referred me to Mass General I am getting help and true answers on disease.so good luck to all and hope I can help some of you.
    Fish468 Fish468
    41-45, M
    3 Responses Jun 20, 2012

    hey there I am going

    though the 3rd stroke in 3 years now loss of vision in left eye. right eye going slowly. don't really know what to do I am taking a vitamin cocktail prescribed by nuro doc. good days are still there but energy after a bussy couple days need 3 days of rest. tried to return...
    bclogger75 bclogger75
    36-40, M
    2 Responses Aug 17, 2015

    Melas 26 Males

    I started having myoclonic seizures around 18, then falling when standing almost everytime for about a year, that went away but i developed extreme fatiuge and adhd. Physicaly i was weak, was never hungry, but nothing to make me concerned i had something serious, i got a bug and...
    ducktapedave ducktapedave
    Jun 8, 2012

    Mela Help

    But I want to offer help to people posting here. I searched the internet for my symptoms and they match MELAS very very strongly. But I may have a very mild form compared to waht the people here have posted. I have hearing loss since I was teens but progressed and I received...
    dirakot dirakot
    1 Response Feb 6, 2011

    My sister was diagnosed with MELAS at age 8,

    in 2009. It all started with an epileptic seizure, so first the doctors thought she has epilepsy, but then the muscle biopsy showed she has MELAS - mutation A3243g. She has several stroke like episodes and a sort of epileptic seizures and after that headaches. In hospital she...
    lucija444 lucija444
    22-25, F
    2 Responses Dec 27, 2013

    Mother Of A Child With Melas

    My son was diagnosed at a very young age with MELAS. He had a feeding tube for 13 years. He struggled for years...went through a stage where things seemed better. He is now 17 and has began showing some signs of regression along with some major anger issues. Has anyone else...
    xander2013 xander2013
    41-45, F
    3 Responses May 18, 2012

    Looking For Answers.............

    First let start by saying i am scared. The doctors say i more than likely have Melas syndrome .I have sever musule pain ,my eyes come and go,its getting harder to hear or comperhen,strokes with left side weak,sizers that seem to be getting worst and lost of the abilty to think...
    Tonyscared Tonyscared
    4 Responses Jun 26, 2011

    Answers For My Brother, Andrew

    My name is Katie, i am 27 years old. I am actually on here looking to hear others stories of people with MELAS syndrome. Currently my 19 year old brother, Andrew is at the hospital after having a stroke. His medical issues actually started in 1999 when he was diagnosed with ADHD...
    Ktaj27 Ktaj27
    26-30, F
    2 Responses Jul 3, 2012

    My Daughter Aged 8 Was Diagnosed At 3 With Melas Syndrome

    My daughter was diagnosed with melas syndrome aged 3... she has alot of the symptoms, deafness, sight problems, kidney problems, no muscle, very small along with other symptoms.... The genetic doctors told me theirs no cure and have to deal with things as and when they happen...
    leanne62 leanne62
    26-30, F
    13 Responses Jun 29, 2012

    Recent Diagnosis

    There's not much to say right now because it's all so overwhelming.  A recent diagnosis for my 22 year old daughter has thrown our lives into turmoil.  Nobody expects to be confronted with a life limiting illness and all the implications of it.  However scary this whole thing...
    Moomoozela Moomoozela
    46-50, F
    6 Responses Aug 16, 2011

    I Have Melas

    just looking for some answers from other people. i have had two stroke like episodes, lost 50% of my left side, and some thought and decision making.
    bclogger75 bclogger75
    36-40, M
    1 Response Nov 26, 2012

    My Daughter Has Been Diagnosed With Melas Last Week

    as i said my 36 year old daughter has been diagnosed with melas.  i would like all info from those in know as to 2nd professional oppionions as to drs with adresses and numbers as well as meds for symptoms etc  we are going to fight this and need all info we can get as to...
    alester alester
    61-65, M
    3 Responses Dec 27, 2010

    Sister Is End Stage Melas

    Hi,This is my first time on this post.  I'm not really sure why I'm here, other than to reach out to others that might understand.  My sister is 44 years old and is very ill from MELAS.  I've been her sole support for almost 10 years, many of those have been spent...
    firefly1245 firefly1245
    41-45, F
    8 Responses Jan 26, 2010

    I have a 2 year old son,

    Declan, who was just diagnosed with MELAS. He was the picture of health until about 5 months when he drastically started losing weight and stopped meeting his developmental milestones. Currently, his symptoms include complete pancreatic insufficiency, global developmental delays...
    MELASmomtoDeclan MELASmomtoDeclan
    31-35, F
    1 Response Dec 12, 2013

    Husband's Melas

    My 41 year old husband was diagnosed in February 2013 with MELAS syndrome, after being hospitalised with a 'stroke' which only affected his speech, then being discharged after 3 days, and then being readmitted 5 days later following a seizure while with the speech therapist. He...
    Narmora Narmora
    51-55, F
    4 Responses Sep 26, 2013

    My 29 Year Old Son

    My son was diagnosed four years ago with MELAS. It sucks.
    carolee214 carolee214
    61-65, F
    1 Response Oct 14, 2013

    Hello, My dad was recently diagnosed with

    melas. My family and I are struggling to support him and ourselves. Is there anyone out there (particularly in Australia) that wants to see support groups and services? I feel like there's no where to turn to for help. Or can anyone offer tips on how you cope? I need help, thank...
    hellokat33 hellokat33
    22-25, F
    1 Response Jul 14, 2014

    My Melas Story So Far...

    I am 51. I found out I have MELAS about 10 years ago after my Mother passed away suddenly at 50, my brother had his first 'stroke' at 33 and passed away at 41, and my older sister had her first 'stroke' at 40 and passed away at 47. They both ended up blind with dementia in...
    design25 design25
    1 Response May 22, 2012

    Doctor With First Melas Experience

    Hello to all, I am a San Francisco Hospital physician, "hospitalist". A young man(twenties) just came in last week with a "stroke", clinical myopathy(muscle wasting), hearing loss(progressive since a boy). Though I had never seen a "case" before, I wound up making a diagnosis...
    DoctorPat DoctorPat
    56-60, M
    3 Responses Jun 4, 2013

    Melas Help

    Hi my name is Jo and I am so happy to have found this page I have looked so many times for help as I don't understand my diagnosis, if I have started the symptoms yet, and i am scared for my future. I am 33 years old and was diagnosed 3 years ago with MELAS as my mother who they...
    angeljojo angeljojo
    31-35, F
    3 Responses Jul 18, 2012
    fnf28 fnf28
    31-35, M
    Nov 10, 2015

    My Lovely Sister

    My sister wasn't diagnosed with MELAS until the age of 13, she showed symptoms all her life. But no one had answers muscle cramps, asthma like breathing when she got around 19 or 20 that's when everything went downhill. She showed signs of dementia and seizures at age of 24 she...
    RobinSmoot1979 RobinSmoot1979
    1 Response Jan 25, 2013

    Clinical Trial

    We have an IRB approved clinical trial for patients with MELAS and the A3243G mitochondrial mutation.  Please e-mail me back.  Kris
    kris4eng kris4eng
    1 Response Apr 13, 2011

    My Nephew Has The Eelas

    He is only 18 months. The doctor said there is no way to cure. Any suggestions would be appreciated.
    lanhuom lanhuom
    Dec 15, 2010

    Melas Is The Worst Thing A Person Can Ever!!!!

    My 15 year old son just died from this less than a month ago. He had mgraine headaches all of his life. He was 15 months old when we found out he had hydrocephalous (water on the brain). He got a VP shunt and things went down hill from there. We managed to get him through...
    ThissucksMELAS ThissucksMELAS
    46-50, F
    2 Responses Apr 5, 2013

    Fed Up

    In 2005 i was diagnosed with lupus medication is that then i was diagnosed with melas just last year and this has the affect on your body as lupus I've had a stroke i have heart failure restrictive lung dease i been having TIA
    peydon1210 peydon1210
    1 Response Jun 19, 2013

    Living Day By Day

    Our daughter first started having seizures at age 10. Not knowing why, neither the doctors or hospital staff could figure what was causing these. A year had gone by with no explanation other than possible diagnosis of her episodes. It wasnt until she was in phenb. indused coma...
    dannyduck dannyduck
    46-50, M
    1 Response Jun 19, 2013

    I Was Diagnosed With Melas Syndrome Several Months After My Brother Was Diagnosed With It And He Died 11 Months After Being Diagnosed And We Never Knew It Existed In The Family. I Feel That I'm On My Own With This As No-one Knows Anything About It.

    Everytime I go to the doctors or to see my consultant they make me feel as though thier's nothing wrong with me. But why am I in alot of pain in my back and legs and feet, I've just had to have an injection in my right shoulder because I couldn't lift my arm and I still can't...
    clockley clockley
    46-50, F
    3 Responses Aug 4, 2012
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