🙌💚🙌✝🕊 GOD Bless. I thank you for shinning light on your life and condition. I appreciate it so much. I'm a student in Respiratory Therapy Program and will see so much in an acute hospital setting. I was never aware until now watching your educational and inspiring videos.
You are really brave and resilient! If I may ask, what helps you deal with so much pain and fatigue? My father has been chronically sick for 2 years now, and he seems to be unable to bear the constant pain. I feel very helpless that and am lost on how to help him feel better.
Thank you for your kind words. I am sorry to hear your father has been chronically sick for two years. The best thing I did for pain control was change my diet. I eliminated sugar from my diet. I also looked up anti-inflammation foods and diet suggestions. I changed my diet to include anti-inflammatory foods such as ginger, turmeric, cinnamon and lots of fresh fruits and vegetables. I hope your father has some pain relief soon.
Dear gal, thanks for sharing what you have to deal with and being open with personal moments. I can't say enough about you and others who deal with this disease and the challenges you all face you folks are inspirations to us. Take care God bless Russ
Hello My Dear and Precious Friend You are a Warrior. When I watched all of the different things you go through I am full of pain for you. I watched with such sadness and hurt for you as you listed all of the different things your body goes through. When you have Difficulty Speaking how often does that happen and what calms that down? The Muscle Spasms Look So Painful I Cried Out to Jesus Help My Friend Take them away. I am Very Sorry how Mitochondrial Disease has affected you but you are a Warrior and Jesus will see you through and I am Praying for Jesus to Heal You.
Hello. Thank you for all your support. I really appreciate it. I love the ability to speak when i get really tired. I have to rest. Once my body rests and recovers, I regain the ability to speak. I hope you are having a nice day.
Do you have Ehlers-Danlos syndrome? it looks like you had hyper mobile fingers when you had dystonia. It looks like Mitochondrial Disease may resemble a mixture of Multiple Sclerosis (MS) and Mast cell activation diseases like MCAS, HαTS or systemic mastocytosis.
Thank you so much for your comment. I do have Ehlers-Danlos Syndrome (EDS). Whether it is the hypermobile type or a different type is not clear. Some fun statistics, 80% of people with Mitochondrial Disease (Mito) have dysautonomia-with the most common form of dysautonomia being Postural Orthostatic Tachycardia Syndrome (POTS). Some studies have suggested ninety percent of people with POTS have the triad of POTS, EDS and Mast Cell Activation Syndrome (MCAS). So, many with Mito have Mito, POTS, EDS and MCAS. In short, many with Mito have MCAS symptoms. However, not all Mito patients have MCAS. Multiple Sclerosis (MS) affects the nervous system. The most common symptoms of MS are fatigue, memory difficulties, mood changes, mobility issues, numbness, pain, tingling and vision impairment. Mito is a disease which inhibits the body’s ability to produce energy. All organ systems can be affected. Mito is suspected when three or more organ systems are showing signs or symptoms of disease. Although every person with Mito is different, symptoms can include: muscle pain, muscle weakness, GI issues affecting the mouth through the colon, migraines, kidney disease, heart disease, liver disease, blindness, deafness, cognitive issues such as intellectual development disorders or mental regression, seizures, respiratory impairment/failure, droopy eyelids, misaligned eyes, muscle wasting, failure to thrive, hypoglycemia, diabetes, an inability to maintain electrolyte levels, strokes and stroke-like episodes, metabolic acidosis, unrelenting exhaustion, etc. Stress and fatigue greatly worsen Mito symptoms and can cause Mito progression. Surgery, heat, medicines, sleep deprivation or stressful situations can cause the person’s body to go into crisis mode, or the opposite happens and it completely shuts down. Sadly both situations may lead to death. While someone with Mito may have the same symptoms as someone with MS and/or someone with a Mast Cell Activation Disease, there are many symptoms which a person with Mito has which are not usually part of MS or Mast Cell Activation Diseases.
You are a warrior 🫂, Your work even with lot of pain in this channel gives lot of hopes to people out there, Thank you, you are awesome 💕, Love you and Love you more 😍🖤🫂
Im sorry that your situation is more difficult than mine.😢Lets pray always 🙏❤
Thank you. Yes, let's pray.
🙌💚🙌✝🕊 GOD Bless. I thank you for shinning light on your life and condition. I appreciate it so much. I'm a student in Respiratory Therapy Program and will see so much in an acute hospital setting. I was never aware until now watching your educational and inspiring videos.
Hello. Thank you for your kind words. I hope everything goes well for you.
You are really brave and resilient! If I may ask, what helps you deal with so much pain and fatigue?
My father has been chronically sick for 2 years now, and he seems to be unable to bear the constant pain. I feel very helpless that and am lost on how to help him feel better.
Thank you for your kind words. I am sorry to hear your father has been chronically sick for two years. The best thing I did for pain control was change my diet. I eliminated sugar from my diet. I also looked up anti-inflammation foods and diet suggestions. I changed my diet to include anti-inflammatory foods such as ginger, turmeric, cinnamon and lots of fresh fruits and vegetables. I hope your father has some pain relief soon.
Dear gal, thanks for sharing what you have to deal with and being open with personal moments. I can't say enough about you and others who deal with this disease and the challenges you all face you folks are inspirations to us. Take care God bless Russ
Thank you so much. I appreciate all your kindness.
Hello My Dear and Precious Friend You are a Warrior. When I watched all of the different things you go through I am full of pain for you. I watched with such sadness and hurt for you as you listed all of the different things your body goes through. When you have Difficulty Speaking how often does that happen and what calms that down? The Muscle Spasms Look So Painful I Cried Out to Jesus Help My Friend Take them away. I am Very Sorry how Mitochondrial Disease has affected you but you are a Warrior and Jesus will see you through and I am Praying for Jesus to Heal You.
Hello. Thank you for all your support. I really appreciate it. I love the ability to speak when i get really tired. I have to rest. Once my body rests and recovers, I regain the ability to speak. I hope you are having a nice day.
Great video.
Thank you.
Do you have Ehlers-Danlos syndrome? it looks like you had hyper mobile fingers when you had dystonia.
It looks like Mitochondrial Disease may resemble a mixture of Multiple Sclerosis (MS) and Mast cell activation diseases like MCAS, HαTS or systemic mastocytosis.
Thank you so much for your comment. I do have Ehlers-Danlos Syndrome (EDS). Whether it is the hypermobile type or a different type is not clear.
Some fun statistics, 80% of people with Mitochondrial Disease (Mito) have dysautonomia-with the most common form of dysautonomia being Postural Orthostatic Tachycardia Syndrome (POTS). Some studies have suggested ninety percent of people with POTS have the triad of POTS, EDS and Mast Cell Activation Syndrome (MCAS). So, many with Mito have Mito, POTS, EDS and MCAS.
In short, many with Mito have MCAS symptoms. However, not all Mito patients have MCAS.
Multiple Sclerosis (MS) affects the nervous system. The most common symptoms of MS are fatigue, memory difficulties, mood changes, mobility issues, numbness, pain, tingling and vision impairment.
Mito is a disease which inhibits the body’s ability to produce energy. All organ systems can be affected. Mito is suspected when three or more organ systems are showing signs or symptoms of disease.
Although every person with Mito is different, symptoms can include: muscle pain, muscle weakness, GI issues affecting the mouth through the colon, migraines, kidney disease, heart disease, liver disease, blindness, deafness, cognitive issues such as intellectual development disorders or mental regression, seizures, respiratory impairment/failure, droopy eyelids, misaligned eyes, muscle wasting, failure to thrive, hypoglycemia, diabetes, an inability to maintain electrolyte levels, strokes and stroke-like episodes, metabolic acidosis, unrelenting exhaustion, etc.
Stress and fatigue greatly worsen Mito symptoms and can cause Mito progression. Surgery, heat, medicines, sleep deprivation or stressful situations can cause the person’s body to go into crisis mode, or the opposite happens and it completely shuts down. Sadly both situations may lead to death.
While someone with Mito may have the same symptoms as someone with MS and/or someone with a Mast Cell Activation Disease, there are many symptoms which a person with Mito has which are not usually part of MS or Mast Cell Activation Diseases.
Don Major guest
Thank you for sharing.
You are a warrior 🫂, Your work even with lot of pain in this channel gives lot of hopes to people out there, Thank you, you are awesome 💕, Love you and Love you more 😍🖤🫂
Thank you so much.
@@LifewithaVentthank you so much for your channel ❤❤❤❤
@@Christinesobsevations Thank you for watching.
What is your Q10 level?
I do not know.