I had 3 uncles and an aunt with Primary cerebellar ataxia. They were all born during the early 50's and doctors were fascinated by them. They always brought in the medical students to see them. My mother was lucky enough to avoid ataxia, but she died of breast cancer in 2014.
She is fantastic... and I love John Hopkins I went there many many years ago before they had a ataxia group and I may have to visit again sometime... I got lucky a older doctor saw my problem and knew when I couldn't get answers anywhere else. And I had a fantastic old personal neurologist as my family doctor who linked family history.
I have EA2 and through the years I take diamox and I follow a modified keto diet. Fatigue and sugar is the worst. I was told to be "a cold fish" meaning avoid fatigue, stress, and carbs at all costs. I still get attacks but they dont last as long. I have been this way for over 30 years.
Thank you for this. You mentioned one thing in the video, that this disease makes the person and the family feel alone. My wife has had this since she was 15-16 years. Been in a wheelchair for the last 13.
@@akhigbegodstime sorry to say, no he wouldn’t. There is nothing for this Wretched disease. Anyone going through it, all I can say is keep up your strength and mobility as long as you can, learn to fall without hurting yourself, and stay ahead of infections.
Thanks so much for the education, I never heard of before about ATAXIA. My next mission is to care ATAXIA clients and I would like to provide the best professional help for her. ❤❤
I have Ataxis because the surgeon was repairing my brain aneurysm. When extracting the surgical instrument, my cerebellum was nicked, creating a bleed stroke.
I was misdiagnosed with neuropathy because of my balance and coordination issues. My conditions happened right after a second stroke. Very bad balance, right arm doesn't work correctly. Have trouble walking and writing. Strength is still there but coordination is the issue. Thank you for the video,
The ataxia I have from a surgical stroke affects the left side of my body, all of it. I've lived with ataxia 22 years. It's becoming difficult since I live alone and still try to have a normal, brain active life.
👍What are common symptoms of ataxia? Balance and coordination are affected first. Incoordination of hands, arms, and legs. Slurring of speech. Wide-based gait. Difficulty with writing and eating. Slow eye movements.
Thankyou for teaching that I stumbled over it looking for health issues. I have migraines from back to be 12 - at 18 I started weak muscles for no reason like trying to curl my hair I couldn’t hold my hands up long enough to do that.:: my migraines get debilitating/ there are times that my vision goes double or triple it can last anywhere from a week to a little over 3 months to adjust back I have to wear a pirate patch ( 😂) to see correctly. I also have fibromyalgia there has been days it’s just hard to breath getting up on my feet has been excruciating my hands & feet both have flare ups on top of that I have noticed that when ever I would damage a muscle like below the knees ( or any muscle ) that it doesn’t heal correctly I can feel the difference/ I also get R.D symptoms where I can bump something or as even getting poked I will feel it ‘’’ but also feel it somewhere else on my body. ( very weird ) I also have what I call Hot poker spots randomly anywhere in my body feels like a hot iron from a fireplace just sticking me hurts like a mf* it always happens within seconds( I look & feel like a idiot because I say ow out loud from that pain ) as a child I had French polio where the left side of me was numb - I got through it / & let’s not forget that my left arm is freaky I have poor circulation it has a color blue to it/ & I can’t leave it down because within seconds blood rushes down my veins bulge out far & actually looks like a purple blue.. let’s see I had a extra cervical rib that was removed at 17 the neurologist thought that it was pinching a nerve & causing the migraines ( how ever he was wrong ) my pituitary gland in front of my head is twice the size it should be. Also had very very brittle bones as a kid I can as much fall down & end up with something always getting broke( worse one was both collar bones broke.. any type of smoke worse one- cigarettes 🚬 would give me a massive migraine to vomiting passing out dehydration so bad that even with my eyes closed I would still see the color blue noise or smells would make me just want to die from them :( I also with migraines would say sentences backwards Yeah “ backwards” before a migraine with it my sentence would be worse..bad DNA 🧬 😂 so thank you if you read all of this & would love to know what is going on with me & if anyone else has anything like I have thank you & stay-safe
I read it all Angela. I also have poor DNA, haha. 😂 I have an hereditary neurological condition called Charcot-Marie-Tooth type 1A. 😀 It is great fun to live with & to read & watch videos 📹 about, particularly a very amusing young lady called Bethany Meloche.🤔 Look it up & see what you think, some of your symptoms are similar. 🤔 Anyway, take care & have a pleasant day. 😊
Undiagnosed STILL... first symptoms age 40, While in military, no TBI. Gets worse, continual occupational, Mood, Physical, vision, speech, auqua, therapies on year 14... The veterans hospital calls Still calls it fibromyalgia... Swollow trouble too. PLEASE HELP, HOW DO I GET DIAGNOSED?
Hi, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.
My grandmother died from this. My dad and his two brothers died from this. My dad's sister died from this. My brother currently has Ataxia and will die soon. I have it and will die too.
Having spent many years in healthcare securing sponsorship funds from big Pharma to fund various projects, it always astounds me that these people (above) spend their time treating the symptoms and not the cure. I find it bizarre. And no one pulls them up on it. It’s wrong. And I wonder who funded this centre.
I suggest you do a little research on this progressive degenerative disease. It has many variations and causes. You can't just assume a medication will cure the person. Have a little compassion - there are genetic variations that affect otherwise healthy individuals that can only hope to keep functioning as long as possible. Their lives are cut in half or more. It is devastating and no cure.
I had 3 uncles and an aunt with Primary cerebellar ataxia. They were all born during the early 50's and doctors were fascinated by them. They always brought in the medical students to see them. My mother was lucky enough to avoid ataxia, but she died of breast cancer in 2014.
She is fantastic... and I love John Hopkins I went there many many years ago before they had a ataxia group and I may have to visit again sometime... I got lucky a older doctor saw my problem and knew when I couldn't get answers anywhere else. And I had a fantastic old personal neurologist as my family doctor who linked family history.
I have EA2 and through the years I take diamox and I follow a modified keto diet. Fatigue and sugar is the worst. I was told to be "a cold fish" meaning avoid fatigue, stress, and carbs at all costs. I still get attacks but they dont last as long. I have been this way for over 30 years.
Excellent explanations! An important part of my ataxia healing is understanding the "etiology" and potential therapy.
Really informative. I had never even heard of this prior.
Thank you for this. You mentioned one thing in the video, that this disease makes the person and the family feel alone. My wife has had this since she was 15-16 years. Been in a wheelchair for the last 13.
I know of someone who can help your wife get better on her health
Message him on Whats App/?/?/?/?
@@akhigbegodstime I appreciate that, but she passed away. There was nothing that anyone could do.
I'm so sorry about that
Bless her soul
The doc I recommend would have been a able to help
I'm so sorry
@@akhigbegodstime sorry to say, no he wouldn’t. There is nothing for this Wretched disease. Anyone going through it, all I can say is keep up your strength and mobility as long as you can, learn to fall without hurting yourself, and stay ahead of infections.
Thanks so much for the education, I never heard of before about ATAXIA.
My next mission is to care ATAXIA clients and I would like to provide the best professional help for her. ❤❤
Excellent explanation
I have Ataxis because the surgeon was repairing my brain aneurysm. When extracting the surgical instrument, my cerebellum was nicked, creating a bleed stroke.
I was misdiagnosed with neuropathy because of my balance and coordination issues. My conditions happened right after a second stroke. Very bad balance, right arm doesn't work correctly. Have trouble walking and writing. Strength is still there but coordination is the issue. Thank you for the video,
Ataxia symptoms sound very similar to multiple sclerosis.
The ataxia I have from a surgical stroke affects the left side of my body, all of it. I've lived with ataxia 22 years. It's becoming difficult since I live alone and still try to have a normal, brain active life.
Was just diagnosed with Ataxia, what a great, informative presentation! Thank you!
Hey do you have ataxia, search for Dr nafuar on UA-cam he has herbal cure
@@gloriauzuazomaroadakporia1451 sure mam
@@gloriauzuazomaroadakporia1451 it definitely cure or
He is genuine or
@@gloriauzuazomaroadakporia1451hi
@@surendrapardeshi4234 yeah he is sure and he cured me permanently from ataxia
I wish there was a dr who could help me😢
Thank you!
Where are you located???? Thanks 😊
You can find our patient care locations here: www.hopkinsmedicine.org/patient-care/locations
It's quite a problem in Cyrodiil.
It's sooo amazing 💜
So disappointed you did not mention OT. I hope the ataxia center includes OT.
робите аналіз на ген-сцатаксії?Робіть.
What about ataxia as a result of my 2 brain surgeries?
Could cerebellum ataxia be from car accident head injury? Could it be misdiagnosed as inner ear disorder?
You can learn more about ataxia here: www.hopkinsmedicine.org/health/conditions-and-diseases/ataxia
mild defuse in cerebuller in mri report show. current I am sufferring from walking and talking imbalnce problem..
When i look at my med records only its says i have ataxia but dont know how i got it or what kind
I'm trying to learn about this I have it caused by drinking and head trauma is it true that people die from this
👍What are common symptoms of ataxia?
Balance and coordination are affected first.
Incoordination of hands, arms, and legs.
Slurring of speech.
Wide-based gait.
Difficulty with writing and eating.
Slow eye movements.
Seizures too
kya kre ilaz me...🙏🙏
Thankyou for teaching that I stumbled over it looking for health issues. I have migraines from back to be 12 - at 18 I started weak muscles for no reason like trying to curl my hair I couldn’t hold my hands up long enough to do that.:: my migraines get debilitating/ there are times that my vision goes double or triple it can last anywhere from a week to a little over 3 months to adjust back I have to wear a pirate patch ( 😂) to see correctly. I also have fibromyalgia there has been days it’s just hard to breath getting up on my feet has been excruciating my hands & feet both have flare ups on top of that I have noticed that when ever I would damage a muscle like below the knees ( or any muscle ) that it doesn’t heal correctly I can feel the difference/ I also get R.D symptoms where I can bump something or as even getting poked I will feel it ‘’’ but also feel it somewhere else on my body. ( very weird ) I also have what I call Hot poker spots randomly anywhere in my body feels like a hot iron from a fireplace just sticking me hurts like a mf* it always happens within seconds( I look & feel like a idiot because I say ow out loud from that pain ) as a child I had French polio where the left side of me was numb - I got through it / & let’s not forget that my left arm is freaky I have poor circulation it has a color blue to it/ & I can’t leave it down because within seconds blood rushes down my veins bulge out far & actually looks like a purple blue.. let’s see I had a extra cervical rib that was removed at 17 the neurologist thought that it was pinching a nerve & causing the migraines ( how ever he was wrong ) my pituitary gland in front of my head is twice the size it should be. Also had very very brittle bones as a kid I can as much fall down & end up with something always getting broke( worse one was both collar bones broke.. any type of smoke worse one- cigarettes 🚬 would give me a massive migraine to vomiting passing out dehydration so bad that even with my eyes closed I would still see the color blue noise or smells would make me just want to die from them :( I also with migraines would say sentences backwards Yeah “ backwards” before a migraine with it my sentence would be worse..bad DNA 🧬 😂 so thank you if you read all of this & would love to know what is going on with me & if anyone else has anything like I have thank you & stay-safe
I know of someone who can help you get rid of your migraine completely
Message him on Whats App
I'm sending you healing lifeforce energy in big waves of white light. Open your arms out to the sides, palms upward, and be ready to receive.
I read it all Angela. I also have poor DNA, haha. 😂
I have an hereditary neurological condition called Charcot-Marie-Tooth type 1A. 😀
It is great fun to live with & to read & watch videos 📹 about, particularly a very amusing young lady called Bethany Meloche.🤔
Look it up & see what you think, some of your symptoms are similar. 🤔
Anyway, take care & have a pleasant day. 😊
Undiagnosed STILL... first symptoms age 40, While in military, no TBI. Gets worse, continual occupational, Mood, Physical, vision, speech, auqua, therapies on year 14... The veterans hospital calls Still calls it fibromyalgia... Swollow trouble too. PLEASE HELP, HOW DO I GET DIAGNOSED?
Hi, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication.
If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.
Great information. Could use less upspeak. Makes it difficult to take a professional seriously.
My grandmother died from this. My dad and his two brothers died from this. My dad's sister died from this. My brother currently has Ataxia and will die soon. I have it and will die too.
I know of someone who can help you get rid of this disease
Message him on Whats App????
Does the Dr in this video have it? Her speech is pretty slurred and not clear.
I have this
Why the vocal fry?
1:08 3:08 8:25 9:41
Having spent many years in healthcare securing sponsorship funds from big Pharma to fund various projects, it always astounds me that these people (above) spend their time treating the symptoms and not the cure. I find it bizarre. And no one pulls them up on it. It’s wrong. And I wonder who funded this centre.
I suggest you do a little research on this progressive degenerative disease. It has many variations and causes. You can't just assume a medication will cure the person. Have a little compassion - there are genetic variations that affect otherwise healthy individuals that can only hope to keep functioning as long as possible. Their lives are cut in half or more. It is devastating and no cure.