I was just diagnosed last week with SCA3. They ran genetic testing and thats how the found it. I started falling a lot. That was my first sign. I stay dizzy. I just want to take care of myself. My parents died and my husband and children left me. I hope they come with a cure soon. I had no my cerebellum shrank. I keep asking myself what I did wrong, nut have no answer or help. Thx for sharing.
My mother had ataxia before I was born. We often talked about her condition. I can remember talking about it since I was 8 years old. She really encouraged me to exercise, especially stretching. I was really limber. She seemed to be so proud that I could bend and stretch in just about all direction. We even played with my exercising, which made me do it often. My mother died at the age of 44. I expected to be gone around that age too. I kept my memories of how we interacted together. Presently I am 73 years old. I watched her struggle to get on her knees to pray every night. So that led me to believe that she prayed the sickness away from her children. I say that because her some of her sisters and brothers and some of their children suffered from the same fate. NOW... I believe I had ataxia all along. When one of my cousins talked about his experiences, he told me to be careful about falling down in the 1990(s). That made me reflect back... I can remember having symptoms as far back at the age of 12. I have always studied family's symptoms and readings about ataxia and applied them to myself. I would love to discuss this with whoever will listen because this text will go on and on too much. I have never been tested. I feel I'm doing fine. My story should be heard. HELP!
I'm five minutes into this and I'm sitting here mentally checking off every symptoms he's had and thinking " Yep... Yep... Yep.... Yep.... Oh thank God someone else had that so I don't think I'm totally crazy now " .... SCA 1 ( Spinocerebellar Ataxia 1... The first one found/diagnosed in 91 or 93.. somewhere in there ). His falling to the right, mine is to the left ..
I was diagnosed 2 weeks ago with ataxial. I had vision, hearing, rising and lowering BP. I had have trouble with balancing and wall walking and my shaking hands. Finally I have a sharp tingling i and muscle pain in my left leg. They have given muscle and brain test and psychologist test but I don't know how effect the studies will work.
I was just told that I have spinocelabeller ataxia about six months ago. I'm 57 years old and I think that I've had it for at least five years. I have sleep apnea and to make it worse I've had eight back surgeries. I would love to talk to others that have it.
Yes because even when no one else can physically see it, our bodies are working ( muscles and nerves ) to hold a position, not shake, not jerk, etc... so we can get physically exhausted while sitting somewhere and not doing a dang thing . It sux. Bad. That is one of the reasons a lot of people don't believe anything is wrong with us because they don't see the physical signs per se.
Yes. Your basic struggles to have a semblance of normality through your day produces great fatigue. Just reading is demanding strength. Basically you can look around you Ann's see things you started laying around (unless someone picks up). Alone you gather fatigue and don't recover strength completely. You have to realize a new schedule of activity vs. strength or endurance. Be honest with yourself 1st.
@@davidmcvicker9669 David it will be with you for the rest of your life. Take care of other health needs whenever they present themselves. 5 backsurgeries need consideration. I've had 2 and they must be considered part of my therapy. Relax don't push yourself. Moment by moment live . Enjoy you. There is a lot stored up in you...consider each moment yours for the season. Get in touch with God. He is always thinking about you.
From my understanding, the cerebellum starts to shrink. There are 40 different types that have been given names but more that have not. Usually begins from imbalance and slurred speech. It does not discriminate between age nor gender. There is no cure like they said here as of yet. Research is scarce do to not having the funds and I feel it is because people do not know about it because it is not as common as cancer. However for a group of patients that have a certain type of Ataxia, researchers are discovering these patients are missing a type of protein and as a result they have developed a medication that will at least slow it down. I have been researching this disorder for only the past 2 days, so I do not know alot about it. But what I do know has been confirmed by doctors and actual people who have this disorder (there is a conference this weekend in Las Vegas.)
I have complete respect and admiration to you for sharing your story, thank you. And bless you for the 20 years you've been through. I have the same kind of Ataxia as you, Cerebellum Ataxia. Indeed, it is rare, 1st thing I was told. However, I have to admit to being a bit jealous of you. You see, a lot of us, from the minute of our diagnosis feel like we're all alone with no one to turn to. You had relationships in the medical field and that's great!! I'm so happy for you that you had people to help you deal with this life changing diagnosis! Just as a comparison just between 2 subjects of the same diagnosis, you and I, your speech is much better than mine, unfortunately, speech for me is one of the early things affected. I've been diagnosed for 3 years. I'm already using a cane, should be using a walker but I mentally can't keep up with my physical decline. I will use my electric scooter ( my husband and sons went behind my back and got it because I wasn't able to enjoy the things I used told due to my inability to get to those places) in situations that absolutely call for it and I keep telling myself, it's better than not being there at all. I guess what I'm saying is it seems like your psychological, mental adjustment to what equals to most of us AND our loved ones and friends is a lifestyle change is and was an easier adjustment for you than some of us? I only bring this up because you don't bring it up at all and there is , I feel, a huge part that this plays in having the disease. I hope this makes sense and I hope I haven't offended you. That's not my intention. For me you're refreshing as I've never met anyone like me in real world. Just videos. I hope you get this message because I NEVER put out this long of a message, it's hard for me to hit the right keys with my terrible, whatever it is when your finger doesn't go where you are aiming for.... example; arms out straight to the side, now touch your nose with your finger. Apparently I have terrible aim when I'm absolutely confident I'm heading straight for the tip of my nose, hahaha 😅..... I'm just trying to convey how important your video is to me, the impact it's had on me and I'm so happy you shared, so bravely!! Thank you!! Lori
What an amazing story! It’s like if I was repeating my daughters case. She was diagnosed at 12 years of age, now 30. The struggle with walking, swallowing,talking and eyesight,among others is becoming worse each day! Thanks for your testimony! God bless you !
I was diagnosed with Cerebellar Ataxia on January 21st, 2023 and had never heard of it before. I started with involuntary movements on my toes and leg cramps almost 3 years ago but just ignored those symptoms. I had a stroke in June which was misdiagnosed as sciatica and in September I had Covid and I started having issues with balance.
I’ve been diagnosed w Ataxia of unknown cause so far… I don’t have jerky movements of limbs, but have nystagmus, only seen by 1 Neurologist, and teeth chattering and lip movements, plus imbalance, veering backwards, to left and sometimes to the right. I also have sleep apnea, incontinence, varying blood pressure, and memory and work recall issues. Would love to hear about other peoples symptoms. Very frustrating.
Think I might have this I was looking up details about a rare eye condition I had and there was a list of other disordered that are often linked so I decided to read about them and soon as I read about ataxia it was like a weight had been lifted finally a name for the things I’ve dealt with all my life but doctors didn’t know why. Body jerks, tremor, bad balance, trouble walking, bad co ordination, forgetting how to swallow , trouble talking at times, forgetting how to do simple things. Waw it’s an actual condition not sure wether to laugh or cry 🙈
I don't know about your insurance, maybe see your regular doctor, but somehow see a good neurologist, have a brain MRI to verify it. What is the neurologist looking for? The neurologist is looking for an atrophied cerebellum. I was diagnosed 10 years ago and am using a walker or wheelchair now.
I have ataxia due to AVM....I HAVE SAME SYMTOMS some vitamins, prescriptions make me dizzy can't take many.......b12.. d3... magnesium omega3 is my go to
I really appreciate this! I am disabled because I have ataxia. I have suffered thousands of sleepless nights! This gentleman has done an excellent job in explaining the symptoms! Mine originally started because of a brain tumor in my cerebellum and underwent a crainectomy. My uncontrollable vomiting was thankfully controlled once the tumor was removed. But, all of the other symptoms make me absolutely miserable!!! Every year it's getting worse! I'm definitely going to contact. Thank you very much!
I was diagnosed with cerebellar ataxia 4years ago it's the pain my joints I find really bad and I have absolutely no balance pity you don't come to Scotland I would love to come to one of your meeting
I have ataxia from ms and I am glad this guy is willing to speak up about it
I was just diagnosed last week with SCA3. They ran genetic testing and thats how the found it. I started falling a lot. That was my first sign. I stay dizzy. I just want to take care of myself. My parents died and my husband and children left me. I hope they come with a cure soon. I had no my cerebellum shrank. I keep asking myself what I did wrong, nut have no answer or help. Thx for sharing.
Very informative discussion. From my research, I have learned that there are over 100 genomic causes of Ataxia! Our genes are very complex!
Great information....I was diagnosed with ataxia about a month ago....looks like I have allot to learn
I'm in the same situation 🙋♀️
I also have ataxia...good to feel not alone
I have had it diagnosed for over 20 yrs. Doctors here don't want to know. Whenever I ask for a group no answer. Floating on a raft...in a storm.
My mother had ataxia before I was born. We often talked about her condition. I can remember talking about it since I was 8 years old. She really encouraged me to exercise, especially stretching. I was really limber. She seemed to be so proud that I could bend and stretch in just about all direction. We even played with my exercising, which made me do it often. My mother died at the age of 44. I expected to be gone around that age too. I kept my memories of how we interacted together. Presently I am 73 years old. I watched her struggle to get on her knees to pray every night. So that led me to believe that she prayed the sickness away from her children. I say that because her some of her sisters and brothers and some of their children suffered from the same fate. NOW... I believe I had ataxia all along. When one of my cousins talked about his experiences, he told me to be careful about falling down in the 1990(s). That made me reflect back... I can remember having symptoms as far back at the age of 12. I have always studied family's symptoms and readings about ataxia and applied them to myself. I would love to discuss this with whoever will listen because this text will go on and on too much. I have never been tested. I feel I'm doing fine. My story should be heard. HELP!
I'm five minutes into this and I'm sitting here mentally checking off every symptoms he's had and thinking " Yep... Yep... Yep.... Yep.... Oh thank God someone else had that so I don't think I'm totally crazy now " .... SCA 1 ( Spinocerebellar Ataxia 1... The first one found/diagnosed in 91 or 93.. somewhere in there ). His falling to the right, mine is to the left ..
Hi, how are you?
Thank you thank you thank you for getting this awareness out there!
It's starts different for everyone. My experience was not the same.
How did yours start Craig? Pls
Wow thanks for sharing this.!
Easy for all to understand
I love this so much!!
Thanks for sharing.
I was diagnosed 2 weeks ago with ataxial. I had vision, hearing, rising and lowering BP. I had have trouble with balancing and wall walking and my shaking hands. Finally I have a sharp tingling i and muscle pain in my left leg. They have given muscle and brain test and psychologist test but I don't know how effect the studies will work.
I have ataxia aswell….can someone here please let me know? What sort of treatments are the best? Any physio-therapy exercises?
does ataxia of genetic origin cause fatigue?
I was just told that I have spinocelabeller ataxia about six months ago. I'm 57 years old and I think that I've had it for at least five years. I have sleep apnea and to make it worse I've had eight back surgeries. I would love to talk to others that have it.
very much so.
Yes because even when no one else can physically see it, our bodies are working ( muscles and nerves ) to hold a position, not shake, not jerk, etc... so we can get physically exhausted while sitting somewhere and not doing a dang thing . It sux. Bad. That is one of the reasons a lot of people don't believe anything is wrong with us because they don't see the physical signs per se.
Yes. Your basic struggles to have a semblance of normality through your day produces great fatigue. Just reading is demanding strength. Basically you can look around you Ann's see things you started laying around (unless someone picks up). Alone you gather fatigue and don't recover strength completely. You have to realize a new schedule of activity vs. strength or endurance.
Be honest with yourself 1st.
@@davidmcvicker9669 David it will be with you for the rest of your life. Take care of other health needs whenever they present themselves. 5 backsurgeries need consideration. I've had 2 and they must be considered part of my therapy. Relax don't push yourself. Moment by moment live . Enjoy you. There is a lot stored up in you...consider each moment yours for the season. Get in touch with God. He is always thinking about you.
Dumb stuff...😂
I love this man.
Look at that. He found out for himself, not through a doctor.
My mother & Grandad died from this....Does anyone know the cause?
From my understanding, the cerebellum starts to shrink. There are 40 different types that have been given names but more that have not. Usually begins from imbalance and slurred speech. It does not discriminate between age nor gender. There is no cure like they said here as of yet. Research is scarce do to not having the funds and I feel it is because people do not know about it because it is not as common as cancer. However for a group of patients that have a certain type of Ataxia, researchers are discovering these patients are missing a type of protein and as a result they have developed a medication that will at least slow it down. I have been researching this disorder for only the past 2 days, so I do not know alot about it. But what I do know has been confirmed by doctors and actual people who have this disorder (there is a conference this weekend in Las Vegas.)
I have an uncle that was just diagnosed and the cause was alcoholism
Seen this hurt. Only it was my father and my daughter.
I have episodic ataxia
My son has Ataxia...
Look into agonist nicotine and ataxia
I have ataxia I never tooked nicotin
I have complete respect and admiration to you for sharing your story, thank you. And bless you for the 20 years you've been through. I have the same kind of Ataxia as you, Cerebellum Ataxia. Indeed, it is rare, 1st thing I was told. However, I have to admit to being a bit jealous of you. You see, a lot of us, from the minute of our diagnosis feel like we're all alone with no one to turn to. You had relationships in the medical field and that's great!! I'm so happy for you that you had people to help you deal with this life changing diagnosis! Just as a comparison just between 2 subjects of the same diagnosis, you and I, your speech is much better than mine, unfortunately, speech for me is one of the early things affected. I've been diagnosed for 3 years. I'm already using a cane, should be using a walker but I mentally can't keep up with my physical decline. I will use my electric scooter ( my husband and sons went behind my back and got it because I wasn't able to enjoy the things I used told due to my inability to get to those places) in situations that absolutely call for it and I keep telling myself, it's better than not being there at all. I guess what I'm saying is it seems like your psychological, mental adjustment to what equals to most of us AND our loved ones and friends is a lifestyle change is and was an easier adjustment for you than some of us? I only bring this up because you don't bring it up at all and there is , I feel, a huge part that this plays in having the disease.
I hope this makes sense and I hope I haven't offended you. That's not my intention. For me you're refreshing as I've never met anyone like me in real world. Just videos. I hope you get this message because I NEVER put out this long of a message, it's hard for me to hit the right keys with my terrible, whatever it is when your finger doesn't go where you are aiming for.... example; arms out straight to the side, now touch your nose with your finger. Apparently I have terrible aim when I'm absolutely confident I'm heading straight for the tip of my nose, hahaha 😅.....
I'm just trying to convey how important your video is to me, the impact it's had on me and I'm so happy you shared, so bravely!!
Thank you!!
Lori
What an amazing story! It’s like if I was repeating my daughters case. She was diagnosed at 12 years of age, now 30. The struggle with walking, swallowing,talking and eyesight,among others is becoming worse each day! Thanks for your testimony! God bless you !
I was diagnosed with Cerebellar Ataxia on January 21st, 2023 and had never heard of it before. I started with involuntary movements on my toes and leg cramps almost 3 years ago but just ignored those symptoms. I had a stroke in June which was misdiagnosed as sciatica and in September I had Covid and I started having issues with balance.
How are you now??
I’ve been diagnosed w Ataxia of unknown cause so far… I don’t have jerky movements of limbs, but have nystagmus, only seen by 1 Neurologist, and teeth chattering and lip movements, plus imbalance, veering backwards, to left and sometimes to the right. I also have sleep apnea, incontinence, varying blood pressure, and memory and work recall issues. Would love to hear about other peoples symptoms. Very frustrating.
May the Lord bless you. I am 71 and had ataxia since I was 10
Think I might have this I was looking up details about a rare eye condition I had and there was a list of other disordered that are often linked so I decided to read about them and soon as I read about ataxia it was like a weight had been lifted finally a name for the things I’ve dealt with all my life but doctors didn’t know why. Body jerks, tremor, bad balance, trouble walking, bad co ordination, forgetting how to swallow , trouble talking at times, forgetting how to do simple things. Waw it’s an actual condition not sure wether to laugh or cry 🙈
I don't know about your insurance, maybe see your regular doctor, but somehow see a good neurologist, have a brain MRI to verify it. What is the neurologist looking for? The neurologist is looking for an atrophied cerebellum. I was diagnosed 10 years ago and am using a walker or wheelchair now.
I have ataxia due to AVM....I HAVE SAME SYMTOMS some vitamins, prescriptions make me dizzy can't take many.......b12.. d3... magnesium omega3 is my go to
I really appreciate this! I am disabled because I have ataxia. I have suffered thousands of sleepless nights! This gentleman has done an excellent job in explaining the symptoms! Mine originally started because of a brain tumor in my cerebellum and underwent a crainectomy. My uncontrollable vomiting was thankfully controlled once the tumor was removed. But, all of the other symptoms make me absolutely miserable!!! Every year it's getting worse! I'm definitely going to contact. Thank you very much!
Hi
I was diagnosed with cerebellar ataxia 4years ago it's the pain my joints I find really bad and I have absolutely no balance pity you don't come to Scotland I would love to come to one of your meeting
Thank YOU very much from South Africa
My 4yo daughter has Ataxia from cancer and I’m scared… I just want her to be better..
This sounds like type 3 diabetes. Diabetes of the brain.
My daughter had severe jaundice and has issues with balance could I get assistance toget diagnosis am a Kenya