Thank you! I have been sent to 2 doctors that did not help at all and didn’t get asked any of the symptoms and put it together. The last md sent me to A rheumatoid doctor and recommended MRI of left hand because it shakes more than right hand. I enjoy how your posts give me a new view and knowledge about my ET . Balance,falls, brain fog, sentences don’t form at times,ET shaking hands and symptoms started at age 60. I look forward to hearing from you and your podcasts!
Has it gotten worse? I am soon to be 58 and I've always had a certain abnormal clumsiness where I can actually fall going UP the stairs. I also have terrible brain fog with Fibro and CFS and migraines. All the tremors started with a severe bout of migraines.
This is the first video I have viewed that gives me information on areas that I deal with daily. My tremors affect my balance, speak, both sides, when I joined a church I would sit there and hold whatever was moving at the time and it would start somewhere else, it probably looked like I had a gerbil inside me. I had a very hard time fitting in with girls especially, I couldn't draw a straight line, color within the lines or write on the board and I could never keep my math lined up. It would be helpful to give kids with ET support with their identification.
I was diagnosed with et 20 years ago and tried every medication. Now a movement specialist told me I have cervical dystonia and et. Can u talk about this and recommend a good medication? Thank you
I am a 79 year old person who has had ET for 25 years or so....In the last few years I have noticed problems with word memory, mild disturbance in gate, and increased anxiety....ET Plus has helped explain this to me....It reduces my concern somewhat in the process...This knowledge is very helpful
I have to add that I saw a neuropsychologist and he taught me breathing exercises. He didn’t do anything to help me understand my ET. I have learned so much about ET from Dr. Sullivan through her lectures. Thank you so much!
My wife has been diagnosed with ET . She has been using medication to try to reduce the movement in one hand. We are waiting for our insurance to cover focused ultrasound for her to undergo this treatment. I am concerned that this research will cause the insurance industry to delay claims for this treatment until more research is done to define this new type of tremor .
You are doing such a great job of this Dr. Sullivan. Continue your great work. Loved your scientific approach to this and review of the journal. I am a movement disorders neurologist and I really enjoyed your presentation. Thanks a lot.
Thank you so much for this video. I think ET is under researched and things are definitely overlooked within the disorder. It is so much more complicated and now that I have found an ET support group I am realizing how many more symptoms that I am having are really ET related.
ET Plus seems to address more of my husband's tremor symptoms. His tremor started some 12-15 years ago (he is now 76) as a unilateral resting tremor. It morphed into a resting/kinetic tremor on both sides. I thought it was Parkinsons, but a DAT scan indicated no. So they classified it as Essential Tremor. However, he is also being treated for anxiety and depression. I've also noticed cognitive issues such as apathy and poor executive functioning. His first neurologist noticed cognitive impairment beyond what is normal for his age. So, the ET Plus category I've recently heard about got me questioning if this could actually be what he has. Still haven't had succcess in treating his tremors (with medication). Movement disorder specialist is going to try botox injections next. Focused ultrasound could be an option for him if botox unsuccessful. Don't know if changing his diagnosis from ET to ETPlus would make any difference for his outcome. At this point, not even sure his specialist is a believer in the ETPlus categorization.
Your comments at 19:33 didn't seem to line up with my condition. I have had it from birth, I inherited it from my mother. I am definitely a ET plus! I have all the symptoms your talking about including jaw movement.I am a 60 year old mail. 250 lbs. High BP/pacemaker/etc... I am so glad for this information, it tells me some of my symptoms which frustrated me but I had no idea it was part of my tremor. Like hunting for a word. I never get to finish I am telling because I always seem to hunt for a word.
I think ET is very misunderstood! My Neuro MDS dr told me 2-3 years ago that my case of ET was just a "special" case. For example... I am right handed but often my left hand shakes worse; when picking up something weighted, I have been told that it should lessen the tremors... not so with me! When I pick up something weighted, my hands shake totally uncontrollable. Things like that were going. on when I went to see him. So, when I see him in July, one of the questions I will ask him is about ET Plus. Has he ever heard of it, etc...
I don't think most doctors care about ET. I've been passed along. I've had ET for almost 70 yrs. Dr's.want to give me medicine, not understand my issues first. Movement spec. Sent me to pain Dr. You are the only neuro anything g that cares about us.
The essential tremor plus should be renamed essential tremor syndrome. This goes beyond just hand or head tremors. I have essential tremor and take medications for it primarily seizure meds. Without them I would be one hot mess. Before I was diagnosed I had memory problems, impaired thinking,stiffness and clumsiness along with the tremors. Now I can include another symptom which is balance issues in the last two years. I wish they would do more research into the condition as it has a serious impact on a person life. This isn’t just a condition due to old age as many young people are being diagnosed with ET.
I have watched quite a few of your videos in the last month. Watching this one now, I feel like the plus aspect complicates things. How many of the people with symptoms similar to PD ended up with PD for example. The treatment options for ET are already slim, the plus aspect wouldn't change that. They need more research on finding other things that help. I appreciate you going over the articles but this one made me feel frustrated, like another thing to have to navigate and explain. I hope the plus part doesn't become a thing. I dont think it would be helpful. These are all symptoms that should be cared about and known by an MDS but I think what you are doing by validating our symptoms and having a clear map is the most helpful.
This gives a little more validation to some of my problems. Despite having the DBS surgery, I am having major balance issues. I did have these before the surgery but I was under the impression that the surgery would at least help in this area. My balance does seem to be worse. My doctor is blaming it on my neuropothy and the numbness I have in my feet.
This is an awesome video! I have ET Plus too. I cognition and problems with my gait. I have trouble walking right. I have anxiety, mood disorder and depression. The problem is I have a new doctor that I’m not sure about. My old doctor graduated and moved. But now things are getting worse my tremors, my cognition and walking. I know I have anxiety and problems with my mood. I do wander is Trigeminal neuralgia related some how? I’m so grateful that I found these lectures.
You are providing a tremendous service to those of us with ET. I have learned as much about my condition as 15 years of going to neurologists has provided me. Thank you!
I found this very interesting since I participated in a Yale University regarding ET and cognition. They came to my house and ran me through many tests and video taped me. I had to agree to donate my brain. They came last December and were going to return in 1 1/2 years to test me again. However, after Dr. Louis reviewed my case I was disqualified because he determined that I did not have pure ET. I am curious as to what that means. Your programs are the most informative I have ever found. I just turned 88 and started having ET when I was 38 starting in my hands but later I also developed a head tremor.
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Thank you! I have been sent to 2 doctors that did not help at all and didn’t get asked any of the symptoms and put it together. The last md sent me to A rheumatoid doctor and recommended
MRI of left hand because it shakes more than right hand. I enjoy how your posts give me a new view
and knowledge about my ET . Balance,falls, brain fog, sentences don’t form at times,ET shaking hands and symptoms started at age 60. I look forward to hearing from you and your podcasts!
Has it gotten worse? I am soon to be 58 and I've always had a certain abnormal clumsiness where I can actually fall going UP the stairs. I also have terrible brain fog with Fibro and CFS and migraines. All the tremors started with a severe bout of migraines.
This is the first video I have viewed that gives me information on areas that I deal with daily. My tremors affect my balance, speak, both sides, when I joined a church I would sit there and hold whatever was moving at the time and it would start somewhere else, it probably looked like I had a gerbil inside me. I had a very hard time fitting in with girls especially, I couldn't draw a straight line, color within the lines or write on the board and I could never keep my math lined up. It would be helpful to give kids with ET support with their identification.
I was diagnosed with et 20 years ago and tried every medication. Now a movement specialist told me I have cervical dystonia and et. Can u talk about this and recommend a good medication? Thank you
I am a 79 year old person who has had ET for 25 years or so....In the last few years I have noticed problems with word memory, mild disturbance in gate, and increased anxiety....ET Plus has helped explain this to me....It reduces my concern somewhat in the process...This knowledge is very helpful
I have to add that I saw a neuropsychologist and he taught me breathing exercises. He didn’t do anything to help me understand my ET. I have learned so much about ET from Dr. Sullivan through her lectures. Thank you so much!
This video is amazing, I wish my go, employer and everyone knew this! Gait, ataxia, go to grab and shake, everything - essential tremor plus me!
My wife has been diagnosed with ET . She has been using medication to try to reduce the movement in one hand. We are waiting for our insurance to cover focused ultrasound for her to undergo this treatment. I am concerned that this research will cause the insurance industry to delay claims for this treatment until more research is done to define this new type of tremor .
You are doing such a great job of this Dr. Sullivan. Continue your great work. Loved your scientific approach to this and review of the journal. I am a movement disorders neurologist and I really enjoyed your presentation. Thanks a lot.
I've just found you and I'm so grateful for the service you provide.
Thank you so much for this video. I think ET is under researched and things are definitely overlooked within the disorder. It is so much more complicated and now that I have found an ET support group I am realizing how many more symptoms that I am having are really ET related.
ET Plus seems to address more of my husband's tremor symptoms. His tremor started some 12-15 years ago (he is now 76) as a unilateral resting tremor. It morphed into a resting/kinetic tremor on both sides. I thought it was Parkinsons, but a DAT scan indicated no. So they classified it as Essential Tremor. However, he is also being treated for anxiety and depression. I've also noticed cognitive issues such as apathy and poor executive functioning. His first neurologist noticed cognitive impairment beyond what is normal for his age. So, the ET Plus category I've recently heard about got me questioning if this could actually be what he has. Still haven't had succcess in treating his tremors (with medication). Movement disorder specialist is going to try botox injections next. Focused ultrasound could be an option for him if botox unsuccessful. Don't know if changing his diagnosis from ET to ETPlus would make any difference for his outcome. At this point, not even sure his specialist is a believer in the ETPlus categorization.
Your comments at 19:33 didn't seem to line up with my condition. I have had it from birth, I inherited it from my mother. I am definitely a ET plus! I have all the symptoms your talking about including jaw movement.I am a 60 year old mail. 250 lbs. High BP/pacemaker/etc... I am so glad for this information, it tells me some of my symptoms which frustrated me but I had no idea it was part of my tremor. Like hunting for a word. I never get to finish I am telling because I always seem to hunt for a word.
I think ET is very misunderstood! My Neuro MDS dr told me 2-3 years ago that my case of ET was just a "special" case. For example... I am right handed but often my left hand shakes worse; when picking up something weighted, I have been told that it should lessen the tremors... not so with me! When I pick up something weighted, my hands shake totally uncontrollable. Things like that were going. on when I went to see him. So, when I see him in July, one of the questions I will ask him is about ET Plus. Has he ever heard of it, etc...
I don't think most doctors care about ET. I've been passed along. I've had ET for almost 70 yrs. Dr's.want to give me medicine, not understand my issues first. Movement spec. Sent me to pain Dr. You are the only neuro anything g that cares about us.
The essential tremor plus should be renamed essential tremor syndrome. This goes beyond just hand or head tremors. I have essential tremor and take medications for it primarily seizure meds. Without them I would be one hot mess. Before I was diagnosed I had memory problems, impaired thinking,stiffness and clumsiness along with the tremors. Now I can include another symptom which is balance issues in the last two years. I wish they would do more research into the condition as it has a serious impact on a person life. This isn’t just a condition due to old age as many young people are being diagnosed with ET.
I have watched quite a few of your videos in the last month. Watching this one now, I feel like the plus aspect complicates things. How many of the people with symptoms similar to PD ended up with PD for example. The treatment options for ET are already slim, the plus aspect wouldn't change that. They need more research on finding other things that help.
I appreciate you going over the articles but this one made me feel frustrated, like another thing to have to navigate and explain. I hope the plus part doesn't become a thing. I dont think it would be helpful. These are all symptoms that should be cared about and known by an MDS but I think what you are doing by validating our symptoms and having a clear map is the most helpful.
Not sure. Soon to be 71 yrs old. ET of left hand only. Started @18 yrs old. I need know it's an action genetic ET.
Check out our upcoming ET Webinar at www.icfyb.com/webinaret/
TX you. I'm learning so much.
What I would like to know is if any of those people in the study had heck and neck radiation before the tremors started.
This gives a little more validation to some of my problems. Despite having the DBS surgery, I am having major balance issues. I did have these before the surgery but I was under the impression that the surgery would at least help in this area. My balance does seem to be worse. My doctor is blaming it on my neuropothy and the numbness I have in my feet.
This may explain a lot 😮
This is an awesome video! I have ET Plus too. I cognition and problems with my gait. I have trouble walking right. I have anxiety, mood disorder and depression. The problem is I have a new doctor that I’m not sure about. My old doctor graduated and moved. But now things are getting worse my tremors, my cognition and walking. I know I have anxiety and problems with my mood. I do wander is Trigeminal neuralgia related some how? I’m so grateful that I found these lectures.
Excellent video. I have E.T. Plus, I feel that my symptoms fall into this criteria. Thankyou Doctor.
You are providing a tremendous service to those of us with ET. I have learned as much about my condition as 15 years of going to neurologists has provided me. Thank you!
I found this very interesting since I participated in a Yale University regarding ET and cognition. They came to my house and ran me through many tests and video taped me. I had to agree to donate my brain. They came last December and were going to return in 1 1/2 years to test me again. However, after Dr. Louis reviewed my case I was disqualified because he determined that I did not have pure ET. I am curious as to what that means. Your programs are the most informative I have ever found. I just turned 88 and started having ET when I was 38 starting in my hands but later I also developed a head tremor.
How did you manage everyday chores when you first diagnosed ? Did you tremors all over your body ?