My 3 month old daughter died yesterday (Nov 14) of a mitochondrial disease. Just to see her body slowly give out like it did really broke my heart. I wish that we knew what it was, but it’s going to take a while for the lab results.
Hi, I learned about 3 yrs ago after I started having seizures, that mitochondrial myopothy rims in my family. My aunt and grandmother were both diagnosed. I live in a small Alberta, Canada town. The doctors here dont know what is or has been (all my life) causing chronic pain, tremors, cramps, infections, etc. Until I was in my late 20's, I suffered severe leg cramps that would put me in the hospital. Doctors always said it was growing pains. I still have these cramps and the severity is stiĺl horrendous, but not as often anymore. (By the way, I am almost 50) . I have had multipul surgeries for differant types of cancers, and at age 21, I had my first (what looked and presented as) heart attack. By the time I was 42, I had my first ( what looked and presented as) stroke. Both were called a heart attack and stroke but all mris, cts ect show no damage to the origins. At age 44, I started having seizures. Mind you, I only had a total of 4 in a 3 month span but... I have been seeing neurologists, (the first said I wasnt getting enough salt and that the seizures were probably fainting spells) this is when I learned about my aunt and grandmother. I have seen a genealogist who has performed a multitude of tests, put me on 16 differant meds (oh, if my genealogist prescribes q10 or other vitamins, as long as I go to the UofA to fill the prescription, they are free.) Including 4 differant pain killers and 2 muscle relaxants. I still have not got a diagnosis. And my migraines, which started when I was 13, get so bad the can last up to 35 days even going to the hospital for the pain doesnt help. One neuro doctor said that because I can move my eyes ( a chore that causes severe pain) I dont have mitochondrial myopothies. I have severe allergies to alot of things. 9 differant drugs, and plastic, metal, rubber and other things. I cant have blood thinners or ivs. Any thoughts?
My nephew is 16 years and is in India in last two years he has reduced to bones. He seem like confiscated in his body ,such a Braveheart he is ! I can't fathom what he is going through😢 My sister says he cries and asks why this happened to him why this fate ...I feel we are so helpless as we can't help him n see him weaning day baby day
Dr Cohen , my nephew has suspected mitochondrial disease. Could the lesions found on his brain be due to stress in the womb or this terrible nightmare of a disease ? Ray
My son, at present 15 months old, is diagonosed with MELAS. The report also has a column, that says Category is "Uncertain significance". What does this mean? He has delayed milestones atpresent and has also developed problem of infantile spasms. If someone can give me some guidance on how to treat it, it will be very helpful.
My daughter is going through testing now for this to see if she has it. She’s 3 y/o but she doesn’t have seizures. The doc said that usually they think a person has it if a person has it when they have like 3 or more organs affected. For instance, my daughter has hearing problems (already had 2 surgeries), she has kidney problems (chronic hydronephrosis), gastrointestinal problems (chronic constipation), and developmental delays (speech therapy, physical therapy, and occupational therapy). So she has 4 organ systems. Hope this helps.
@@crystalortega2156 I started developing symptoms from March 2021. About 11 months ago. It started with drastic drop in energy levels, body pain and muscle loss. I also had diahrrea (8 months, constantly), irregular heartbeat and blood pressure (low as 80, high as 18, bpm of 110+ when sitting), trouble breathing, getting some sort of episodes where I'd be able to breathe very hard, then get heart pain, and fall on the ground, with my face, legs and left arm going numb. I later got so worse that couldn't walk anymore (was in wheelchair for 3 weeks until a doctor was able to see it as a mitochondrial related syndrome from my abnormally high lactate and low potassium from my blood test), and when the heart scan came back in emergency room they said I had missed a heartattack but my heart was not the cause. So all in all it led my doctor to believe it was mito. I was able to walk again and got rid of the difficulty breathing and moving with help of CoQ10 from just 2 weeks of using. I still have some symptoms left, I sweat alot with smallest movements like standing or sitting, still have high bpm and my blood pressure unlike others goes up when I stand, and I get dizziness and headaches.
I just want to recover. It's really ruining my life. Can you please be in contact with me ma'am so I can ask my questions from you so you can ask them from your doctor please? I'm really out of choices because in Malaysia there is no mito specialist. I would appreciate it immensely. If you'd be so kind and do me this one favor I'd appreciate it immensely. Thank you
@@aidenigelson9826 hey! It was determined that my daughter has 17q12 deletion syndrome, which was determined by a genetics test. I wrote this post when her results were still pending. I would recommend doing a genetics testing to see what exactly is going on. Most issues are chromosome disorders which can be found through genetics testing.
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My 3 month old daughter died yesterday (Nov 14) of a mitochondrial disease. Just to see her body slowly give out like it did really broke my heart. I wish that we knew what it was, but it’s going to take a while for the lab results.
iAmBigRich sending my love
I am so sorry. I have it, mother had it and grandmother did as well. My daughter has it . Sending my thoughts to you. 😢
Holy shit I’m so sorry man. I hope you got answers and closure. So sorry again for your loss
My first born son passed away from mitochondrial disease as well 6 years ago he was 1 month when he passed
Hi, I learned about 3 yrs ago after I started having seizures, that mitochondrial myopothy rims in my family. My aunt and grandmother were both diagnosed. I live in a small Alberta, Canada town. The doctors here dont know what is or has been (all my life) causing chronic pain, tremors, cramps, infections, etc. Until I was in my late 20's, I suffered severe leg cramps that would put me in the hospital. Doctors always said it was growing pains. I still have these cramps and the severity is stiĺl horrendous, but not as often anymore. (By the way, I am almost 50) . I have had multipul surgeries for differant types of cancers, and at age 21, I had my first (what looked and presented as) heart attack. By the time I was 42, I had my first ( what looked and presented as) stroke. Both were called a heart attack and stroke but all mris, cts ect show no damage to the origins. At age 44, I started having seizures. Mind you, I only had a total of 4 in a 3 month span but... I have been seeing neurologists, (the first said I wasnt getting enough salt and that the seizures were probably fainting spells) this is when I learned about my aunt and grandmother. I have seen a genealogist who has performed a multitude of tests, put me on 16 differant meds (oh, if my genealogist prescribes q10 or other vitamins, as long as I go to the UofA to fill the prescription, they are free.) Including 4 differant pain killers and 2 muscle relaxants. I still have not got a diagnosis. And my migraines, which started when I was 13, get so bad the can last up to 35 days even going to the hospital for the pain doesnt help. One neuro doctor said that because I can move my eyes ( a chore that causes severe pain) I dont have mitochondrial myopothies. I have severe allergies to alot of things. 9 differant drugs, and plastic, metal, rubber and other things. I cant have blood thinners or ivs. Any thoughts?
I'm sorry to say this capitalism has ruined our lives. Ur best example of living dead.
My nephew is 16 years and is in India in last two years he has reduced to bones. He seem like confiscated in his body ,such a Braveheart he is ! I can't fathom what he is going through😢 My sister says he cries and asks why this happened to him why this fate ...I feel we are so helpless as we can't help him n see him weaning day baby day
Is Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
one ❓
I got it when I was a baby and I have daytime oxegen ☹️
Dr Cohen , my nephew has suspected mitochondrial disease. Could the lesions found on his brain be due to stress in the womb or this terrible nightmare of a disease ? Ray
My son, at present 15 months old, is diagonosed with MELAS. The report also has a column, that says Category is "Uncertain significance". What does this mean?
He has delayed milestones atpresent and has also developed problem of infantile spasms.
If someone can give me some guidance on how to treat it, it will be very helpful.
How is he now sir ?
Does he have improvement like walking
What about adults just finding out they have it?
My doctor thinks I have a mitochondrial disease but I don’t have any seizures. I have other symptoms but I’ve been to many doctors.
Hi, There is a wonderful mitochondrial disease Dr. Fran Kendall in Roswell Ga.
My daughter is going through testing now for this to see if she has it. She’s 3 y/o but she doesn’t have seizures. The doc said that usually they think a person has it if a person has it when they have like 3 or more organs affected. For instance, my daughter has hearing problems (already had 2 surgeries), she has kidney problems (chronic hydronephrosis), gastrointestinal problems (chronic constipation), and developmental delays (speech therapy, physical therapy, and occupational therapy). So she has 4 organ systems. Hope this helps.
@@crystalortega2156 I started developing symptoms from March 2021. About 11 months ago. It started with drastic drop in energy levels, body pain and muscle loss. I also had diahrrea (8 months, constantly), irregular heartbeat and blood pressure (low as 80, high as 18, bpm of 110+ when sitting), trouble breathing, getting some sort of episodes where I'd be able to breathe very hard, then get heart pain, and fall on the ground, with my face, legs and left arm going numb. I later got so worse that couldn't walk anymore (was in wheelchair for 3 weeks until a doctor was able to see it as a mitochondrial related syndrome from my abnormally high lactate and low potassium from my blood test), and when the heart scan came back in emergency room they said I had missed a heartattack but my heart was not the cause. So all in all it led my doctor to believe it was mito. I was able to walk again and got rid of the difficulty breathing and moving with help of CoQ10 from just 2 weeks of using. I still have some symptoms left, I sweat alot with smallest movements like standing or sitting, still have high bpm and my blood pressure unlike others goes up when I stand, and I get dizziness and headaches.
I just want to recover. It's really ruining my life. Can you please be in contact with me ma'am so I can ask my questions from you so you can ask them from your doctor please? I'm really out of choices because in Malaysia there is no mito specialist. I would appreciate it immensely. If you'd be so kind and do me this one favor I'd appreciate it immensely. Thank you
@@aidenigelson9826 hey! It was determined that my daughter has 17q12 deletion syndrome, which was determined by a genetics test. I wrote this post when her results were still pending. I would recommend doing a genetics testing to see what exactly is going on. Most issues are chromosome disorders which can be found through genetics testing.
I have it :/
Sarah Elizabeth how did you find it
today - mito swab!
Uses of flaticon madicine