Mitochondrial Diseases Support Group

Mitochondrial diseases comprise those disorders that affect the function of the mitochondria and/or are due to mitochondrial DNA. The effects of mitochondrial disease can be quite varied. Since the distribution of defective DNA may vary from organ to organ within the body, the mutation that in one person may cause liver disease might in another person cause a brain disorder.

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  • bny806

    Muscle Atrophy - adults with mito

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    I am in diagnostic limbo, and have been for a couple of years now - but I have diffuse muscle atrophy, weakness, triple furrowed tongue, some sensory stuff as well, heart rhythm abnormalities, GI disturbances and more - but my EMG's have always been negative- which i hear is common in mito diseases... I have droopy eyelids and sibling with similar symptoms now as well (my mother has a triple...
  • clare2125

    How do you deal?

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    My younger brother who turned 16 this year has Mitochondrial disorder complex 1 deficiency. We have not told him yet as we don't know how to break it to him. It is the hardest thing in the world to watch my baby brother slowly fade away without even knowing what is wrong with him. My dad wont talk about it, when I phoned him crying all he had to say to me was"welcome to the adult world" I feel...
  • deleted_user

    any adults with mito here?

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    i am in the process of getting an official dx, seeing a speacialist in atlanta in august, probably had mito seen at least teens, but just recently suspected by my neurologist becasue what he originally thought was parkinsons was rapidly progressing...any one here an adult with mito??
  • Hello, I'm new and I was wondering if anyone ever developed chronic, unrelenting vertigo along with their mito?I have two daughters (16 and 18) and they have both developed unrelenting vertigo. They have it 24/7. My 16-year-old has a feeding tube, as the nausea from the vertigo has caused her to loose so much weight. The neurologist isn't 100% certain it's mito, but he highly suspects it. His...
  • Riah123

    Taking my Vitamins

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    I've been taking vitamins for my whole life I go off and on to being good about taking them because they are gross but the day seems to go by so fast for me I don't even realize that the day is ending soon and I should have taken them so I took them today I haven't taken them for 1 week because I keep forgetting and because of not taking them for a while it's been hard to get out of bed in the...
  • deleted_user

    I lost baby to mito!

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    I lost my baby boy to mito, But i never got the pin point of the mito diseases he had. For any other mommies who lost a baby to mito I just wan't to get a idea of the type of diseases your baby had? and what dose the future hold for you?
  • Hello!My 10-month daughter, Allegra, probably has mitochondrial disorder but it isnt yet confirmed. Were still waiting on some results from lab. For now, shes diagnosed with hypotonic, psychomotoric retardation, lactic acidosis, nystagmus and hypoplasia of small brain.Her acid status is pretty bad all the time. She has high lactates (around 8), pH is usually in alcalic range, over 7.50, and her...
  • deleted_user

    Doctors

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    I was wondering where the best Mito doctors are found in the US? If anyone sees someone they like could they give me the name of the doctor and city he is closest to?
  • Hi everyone,I'm new here and I've gone through quite extensive testing and evaluation for Myopthy ( diagnosed 3 months ago). EMG revealed Mild to moderate proximal with right side being the worst. Cause unknown as of now. I've also been diagnosed with Myasthenia Gravis also and taking medicine which as not made any difference in gait abnormality with my right leg. My walking worsen with exertion....
  • deleted_user

    10 month old with mito

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    My son has had problems since birth. to make it simple I will just list the problems: GERD, failure to thrive, dysphagia, dysautonia, aspiration, abscent seizures, exercise intolerance, edema, he sleeps most of the day and through the night. the list goes on. he just started doing an army crawl, cannot sit,he is tube fed but can drink by mouth but does not drink enough to sustain himself. I...
  • deleted_user

    pregnant with mito?

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    hello I know I have asked a similar question before, but does anyone who was diagnosed with mito as an adult, gone on to have their own children? If you did, was it better to know the possibilities and helped your child or was your child sicker than your or normal? Anything to help me decided what is right to do would help...
  • Is anyone watching Dr. Phil right now march 17th? There is a girl being held at Boston Childrens Hospital against her parents will because the hospital claims there is no such thing as Mitochondrial Disease! This is proof we are ignored by a huge part of the medical community and Im just tired of it. A child should be without her parents and gravly ill? WRONG. Mito is real, this girl needs help...
  • I have been a member for sometime but I don't post anything. I sit back and enjoy reading and sometimes offering help to others if I think I can. Not sure if what I am going through merits discussion, here it goes anyway. I recently had my first sleep study and am happy it is over. I got myself all worked up over it and it was really nothing. Because our disease and some of our symptoms are not...
  • After 8 years of exams, 1 frozen muscle biopsy (general atrophy) 3 normal EMGs (spread over that time) my neurologist (an ALS clinician/researcher) has decided I don't have ALS. However, now that he determined that he basically showed me the door and muttered possible mitochondrial disease/disorder under his breath on my way out. Nothing more - just that.Symptoms for 8 + years (possibly as far...
  • deleted_user

    sphynctor of ODI

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    Does anyone have a sphynctor of ODI Disfunction? I had the open surgery in 2003 and am not having problems again. It was completely closed in dec and have a stent again. Will this mean I need more surgery again. Still in a ton of pain.....