I have TSC. Diagnosed at 3 years of age. I'm going on 42 this June. I am currently getting skin treatment through liquid nitrogen which is working on the face and neck areas. I went for several years episode free up until summer of 2018. My last ones that I had were around mid January this year during the sleep study and EEG. I also had MRI of the brain. Tomorrow I find out what went on with me that night in January. I had one episode where I was staring at the window for a bit and the second one was something that I couldn't tell you what it was because I had sudden extreme pain and strange sensations on the top of the head that literally woke me up. The sensation was like tentacles that was blasting energy all across the head back and forth while crawling at the same time. So I don't know what the neurologist has to say. I had that happen in the past but went so long without it occurring that I forgotten to mention it at my first visit. Anyways I don't know what type of mutation I have. I'm the only one in the family that has this. I have a lot of the issues with the disease but I'm able to do more than some people with it. But if you can tell us more about the complications and issues with the brain involvement I think that would answer more questions. Thanks
Rebecca, thank you for sharing your story. As a channel educating future clinicians and spreading awareness of medical conditions, we are humbled to hear your personal experience. Your question is very specific and case-dependent, and we suggest consulting your neurologist or another physician intimately familiar with your care. We hope that you find the answers you seek!
I'm Karissa Daigneault & I also have Tuberous Sclerosis & also the only 1 in my family with Tuberous Sclerosis. I have seizures, also absent seizures a lot. My kidneys r so effected from the timers that I can't feel when I need 2 p.
my brother have TS since 1997.he has 24 years old.but he just like behavior as a children.there is no tretment in the world.if you have some tretment plz inform me.
Hello my sister have TSC and she doesn't speak. Changes of emotion is the common thing for her, sudden aggression,crying,shouting,and even hurting herself like puching her head, body and even biting. My mother cant even get a rest because even at night she doesn't sleep for 2 or more days and same goes for my mother because she keeps on pulling her when she tries to sleep and sometimes biting my mother, even if you try to stop her she just shout in the middle of the night like getting torture Edit.. I just want it to share to you guys.. sorry for my broken english "Have a nice dayy everyone"
I am so touched by tour stories...I dont know what to say. I wish you happiness and joy. Medicine is making progress day by day. Thinfs get better and better in many (if not all of the) diseases. Some day, maybe really soon, there will be a trratment, or combination of treatments. This is a realistic scenario for Tuberous Sclerosis too! Everything is possible! Dont forget that!
It took docs 12 years to figure out what I had both my parents tested negative for carrying the disease I have it so mildly I have no heart kidney brain eye involvment problems I just had my eyes checked for a persciption glasses and they showed me a model completely normal. I had infantile spasms when I was a kid But I don't have any issues like that at all no sezuires at all 34 years old clean bill of health. But I am mildly developmentally delayed.
Thank you for all the information on this disease. In the future I hope scientists can make medicines that help get the disease under control. Praying 🙏 for new treatments and new medical advances.
I think all of Pixorize's videos could be a little shorter by getting straight to the point without the added "trying hard" humor. Students have a lot of stuff to cover with USMLE. All in all is good.
you could've covered a section in First Aid in these few extra minutes of the time you lost because you are a dead soul and can not have a normal human-like laugh. Geez, have a life!
![ILLSLICK X YOUNGOHM - We're The same [Official Video]](http://i.ytimg.com/vi/yUJNkobYR0E/mqdefault.jpg)
I have TSC. Diagnosed at 3 years of age. I'm going on 42 this June. I am currently getting skin treatment through liquid nitrogen which is working on the face and neck areas. I went for several years episode free up until summer of 2018. My last ones that I had were around mid January this year during the sleep study and EEG. I also had MRI of the brain. Tomorrow I find out what went on with me that night in January. I had one episode where I was staring at the window for a bit and the second one was something that I couldn't tell you what it was because I had sudden extreme pain and strange sensations on the top of the head that literally woke me up. The sensation was like tentacles that was blasting energy all across the head back and forth while crawling at the same time. So I don't know what the neurologist has to say. I had that happen in the past but went so long without it occurring that I forgotten to mention it at my first visit. Anyways I don't know what type of mutation I have. I'm the only one in the family that has this. I have a lot of the issues with the disease but I'm able to do more than some people with it. But if you can tell us more about the complications and issues with the brain involvement I think that would answer more questions. Thanks
Rebecca, thank you for sharing your story. As a channel educating future clinicians and spreading awareness of medical conditions, we are humbled to hear your personal experience. Your question is very specific and case-dependent, and we suggest consulting your neurologist or another physician intimately familiar with your care. We hope that you find the answers you seek!
I'm Karissa Daigneault & I also have Tuberous Sclerosis & also the only 1 in my family with Tuberous Sclerosis. I have seizures, also absent seizures a lot. My kidneys r so effected from the timers that I can't feel when I need 2 p.
my brother have TS since 1997.he has 24 years old.but he just like behavior as a children.there is no tretment in the world.if you have some tretment plz inform me.
Hello my sister have TSC and she doesn't speak.
Changes of emotion is the common thing for her, sudden aggression,crying,shouting,and even hurting herself like puching her head, body and even biting.
My mother cant even get a rest because even at night she doesn't sleep for 2 or more days and same goes for my mother because she keeps on pulling her when she tries to sleep and sometimes biting my mother, even if you try to stop her she just shout in the middle of the night like getting torture
Edit.. I just want it to share to you guys.. sorry for my broken english
"Have a nice dayy everyone"
I am so touched by tour stories...I dont know what to say. I wish you happiness and joy. Medicine is making progress day by day. Thinfs get better and better in many (if not all of the) diseases. Some day, maybe really soon, there will be a trratment, or combination of treatments. This is a realistic scenario for Tuberous Sclerosis too! Everything is possible! Dont forget that!
It took docs 12 years to figure out what I had both my parents tested negative for carrying the disease I have it so mildly I have no heart kidney brain eye involvment problems I just had my eyes checked for a persciption glasses and they showed me a model completely normal. I had infantile spasms when I was a kid But I don't have any issues like that at all no sezuires at all 34 years old clean bill of health. But I am mildly developmentally delayed.
Oma befor go homa 😂😂 very nice and great job dude ,,,
Thank you for all the information on this disease. In the future I hope scientists can make medicines that help get the disease under control. Praying 🙏 for new treatments and new medical advances.
Eagerly waiting for you to make parkinson video. Your mnemonics really resonates with me
I to madam
thank u so much , its very tricky to remember all of this information's , thank u for making it easier
Thanks for watching! Let us know what other topics you would love for us to cover
Thanks ... it is helpfull and funny
Thanks for watching!
thanks alot
if only pixorize team knew tubers are potatoes
Chromosome 16 heal
God
LORD
Paryer
I think all of Pixorize's videos could be a little shorter by getting straight to the point without the added "trying hard" humor. Students have a lot of stuff to cover with USMLE. All in all is good.
you could've covered a section in First Aid in these few extra minutes of the time you lost because you are a dead soul and can not have a normal human-like laugh. Geez, have a life!