Checked the forums. Most are completely empty or close to it.
The only one with any significant activity is http://www.experienceproject.com/groups/Have-Melas-Syndrome/98678 . It's had 50 "threads" posted in the past 7 years, some of which have responses.
One reports difficulty in managing diabetic ketoacidosis, and exercise intolerance:
Another reports going into a less physically demanding job and says:
Sounds similar to PEM:
A man talking about his wife:
A 20 year old man:
A woman regarding her son:
A mother:
A sister:
A familiar situation from someone diagnosed in the UK:
Mother misdiagnosed with ME, before MELAS discovered:
26 year old man:
It sounds like damage is primarily the result of more severe strokes, versus stroke-like episodes or rare seizures.
The only one with any significant activity is http://www.experienceproject.com/groups/Have-Melas-Syndrome/98678 . It's had 50 "threads" posted in the past 7 years, some of which have responses.
One reports difficulty in managing diabetic ketoacidosis, and exercise intolerance:
I try to walk too, it's hard to walk a few blocks w/o muscle pain, and breathing issues, so they gave me 2 inhalers to help with opening up my airway b/c my chest would hurt and burn badly.
Another reports going into a less physically demanding job and says:
When I overdo it the first sign is digestive issues. This is my warning sign. I take good care of myself by listening to my body. When I feel tired I lie down. When I feel shaky, I eat. Some of my friends know about it but don't really understand.
Luckily I was a high-calibre athlete which I think helped with my endurance today, but I NEVER challenge myself now. For me it is more important for my brain to have it's energy needs met rather than impressing anyone else.
Sounds similar to PEM:
good days are still there but energy after a bussy couple days need 3 days of rest. tried to return to my old life as a logger and fireman but just am not able to
A man talking about his wife:
Back home but her quality of life seriousy affected by condition. She had to give up working in 2103 too fatigue and cant do much physical or strenuous tasks around house.
A 20 year old man:
However, All through my youth I always sat down because I was so tired ALL the time. Everyday since I can remember, an hour into the day feels like I ran a marathon and haven't sat down in days. I also have an incrediblly troubled time remembering things, long term and short term. Its very difficult to work, were as I am a line cook, but when Ithink about ssitting behind a desk and having responsibility with important documents or anything of that nature that would help my fatigue, I realise I can't trust my memory very much.
A woman regarding her son:
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 were so lucky an emergency room doctor suspected MELAS right then, and called for the genetic test. Skip suffered from muscle aches due to lactic acidosis as well. He dropped out of school and moved home with mom and dad to recover.
... In August Skip became very ill and was in the hospital 10 days with a bleeding ulcer. At the time he was diagnosed with diabetes as well. He is now on a low dose of insulin. Since then he has become much better, and it would be hard to tell that he has this debilitating illness. Still, life is slow on our farm, and Skip limits his activities
A mother:
This is my story on MELAS. It has given my loss of hearing, diabetes, TIA, muscle pain, migraines, acid reflux and more.
A 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.
A familiar situation from someone diagnosed in the UK:
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 hold anything heavy I think I'm gradually getting worse and yet the goverment as taken my ESA away from me recently and say I'm fit for work. I've appealed against it and I'm waiting to hear about it soon as it's gone to tribunal but I don't hold out much hope.
Mother misdiagnosed with ME, before MELAS discovered:
I am 33 years old and was diagnosed 3 years ago with MELAS as my mother who they suspected of having M.E for the previous 12 years turned out to not have that at all but have MELAS and she has over the years suffered every symptom in the worst case.
26 year old man:
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
It sounds like damage is primarily the result of more severe strokes, versus stroke-like episodes or rare seizures.