sarinah
09-19-2003, 12:33 PM
Hi all,
I am 31 and have recently been diagnoised with ET, after several years of internal tremors. After much research, I am now confused. My tremors are mostly "resting tremors", not generally associated with ET according to what I have read. My tremors seem to get worse under stress, and then may remain during action. Although they are mostly internal, they are noticable on a "bad day", which has been more often lately. They are now to the point that my husband can feel them, by placing his hands on me or at night in bed. After reading a PD website, I noted that some of it seems to apply to me. I have muscle twitching, especailly in the right arm and leg, I am extreamly tired all the time, I have excessive drooling at night, soreness in back, neck and shoulders, and my right leg sometimes won't move, especially when sitting on then floor and then trying to stand. I am also starting to have speech problems. I know what I want to say, it just won't come out of my mouth properly. Sometimes I can't find the words to express myself and occasionally I lose my thought all together. I do not, however, have the "pill rolling" tremor normally associated with PD. The tremors in my hand are actually just a fine quiver for the most part. I am so confused! Dr. has put me on 40mg per day of Propanolol, does not seem to be helping. Any thoughts or suggestions out there??????
[This message has been edited by sarinah (edited 09-19-2003).]
I am 31 and have recently been diagnoised with ET, after several years of internal tremors. After much research, I am now confused. My tremors are mostly "resting tremors", not generally associated with ET according to what I have read. My tremors seem to get worse under stress, and then may remain during action. Although they are mostly internal, they are noticable on a "bad day", which has been more often lately. They are now to the point that my husband can feel them, by placing his hands on me or at night in bed. After reading a PD website, I noted that some of it seems to apply to me. I have muscle twitching, especailly in the right arm and leg, I am extreamly tired all the time, I have excessive drooling at night, soreness in back, neck and shoulders, and my right leg sometimes won't move, especially when sitting on then floor and then trying to stand. I am also starting to have speech problems. I know what I want to say, it just won't come out of my mouth properly. Sometimes I can't find the words to express myself and occasionally I lose my thought all together. I do not, however, have the "pill rolling" tremor normally associated with PD. The tremors in my hand are actually just a fine quiver for the most part. I am so confused! Dr. has put me on 40mg per day of Propanolol, does not seem to be helping. Any thoughts or suggestions out there??????
[This message has been edited by sarinah (edited 09-19-2003).]
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Bruce
09-19-2003, 02:05 PM
ET is a nerve disorder characterized by uncontrollable shaking, or "tremors" in different parts on different sides of the body. Areas affected often include the hands, arms, head, larynx, or voice box, tongue, chin and other areas. Rarely, the lower body is affected.
ET tremor is a postural tremor, so symptoms are usually relieved with rest
Symptoms that indicate you have ET. uncontrollable tremors that occur for brief periods of time, shaking voice, nodding head, tremors that worsen during periods of stress, tremors that get worse with movement, tremors lesson with rest, tremors are the only symptom, although rarely a person with ET may suffer from balance problems.
You are taking a potent drug (aka inderol) that may cause a slow heart beat, changes in behavior, depression and dizziness. Do not stop taking inderal without tslking with your physician.
If this drug is not working your physician may prescribe Klonopin, Valium, Xanax or Ativan, Side effects include drowsiness and physical withdrawal after stopping the medication.
Again, all of these drugs have significant side effects.
Bruce
ET tremor is a postural tremor, so symptoms are usually relieved with rest
Symptoms that indicate you have ET. uncontrollable tremors that occur for brief periods of time, shaking voice, nodding head, tremors that worsen during periods of stress, tremors that get worse with movement, tremors lesson with rest, tremors are the only symptom, although rarely a person with ET may suffer from balance problems.
You are taking a potent drug (aka inderol) that may cause a slow heart beat, changes in behavior, depression and dizziness. Do not stop taking inderal without tslking with your physician.
If this drug is not working your physician may prescribe Klonopin, Valium, Xanax or Ativan, Side effects include drowsiness and physical withdrawal after stopping the medication.
Again, all of these drugs have significant side effects.
Bruce
sarinah
09-19-2003, 03:53 PM
Bruce,
Thanks so much for your reply. I have seen several of your responses and have developed a great respect for your opinion. I am however, still a bit confused. Since my tremors are mostly at rest, could it still be ET that I suffer from, or do I need to have my doc. take a second look? Also, do the medicians you suggested for ET work on resting tremors?
[This message has been edited by sarinah (edited 09-19-2003).]
Thanks so much for your reply. I have seen several of your responses and have developed a great respect for your opinion. I am however, still a bit confused. Since my tremors are mostly at rest, could it still be ET that I suffer from, or do I need to have my doc. take a second look? Also, do the medicians you suggested for ET work on resting tremors?
[This message has been edited by sarinah (edited 09-19-2003).]
Bruce
09-19-2003, 11:13 PM
I can't diagnose you, but words like "gets worse on a bad day", internal tremors, tremors on various parts of the body, speech problems(tremor ?), i would accept your doctor's diagnosis, because he has examined you,
The alternative meds are potent sedative, but i can't assure you they will work. ET is not a life threatening disorder, unless it prevents you from caring for your self. Most people are able to live a normal life, although taking care of your self may become difficult.
Sorry, i couldn't give you better news, but like pd, you can adjust to it.
Bruce
The alternative meds are potent sedative, but i can't assure you they will work. ET is not a life threatening disorder, unless it prevents you from caring for your self. Most people are able to live a normal life, although taking care of your self may become difficult.
Sorry, i couldn't give you better news, but like pd, you can adjust to it.
Bruce
sarinah
09-20-2003, 10:39 AM
Bruce,
Thanks so much for your help. I actually think it is great news!!! I was afraid I may have something more serious that the doctor was over looking. I can definitely live with ET. You have calmed my fears, and I am very greatful to you. Thank you for your time, it is truely appreciated! Sarinah :)
Thanks so much for your help. I actually think it is great news!!! I was afraid I may have something more serious that the doctor was over looking. I can definitely live with ET. You have calmed my fears, and I am very greatful to you. Thank you for your time, it is truely appreciated! Sarinah :)
Bruce
09-20-2003, 12:37 PM
Your welcome. In the future, if you would like to get rid of the tremors, their is a deep brain stimulation of the thalamus that is specific for tremors that has been performed for years and has been a auccessful procedure.
I have had two bilateral DBS/STN surgeries which is a newer surgery and is for pd and i have no tremors, but you must be at the point where no medication will no longer work.
The surgery is easy to tolerate and is done while you are still awake.
I wish you the best.
Bruce
I have had two bilateral DBS/STN surgeries which is a newer surgery and is for pd and i have no tremors, but you must be at the point where no medication will no longer work.
The surgery is easy to tolerate and is done while you are still awake.
I wish you the best.
Bruce
virtual_rose
11-06-2003, 01:23 AM
I posted under the immune thread headed -NEWBIE-worried..can anybody help ---i was talking to friends and one of them said parkinsons...my grandmother had that,i have no idea wether its heredatary or not but these internal tremors you talk about is what i have in my hand and arm however it also causes my hand and fingers to twitch and jerk...but i notice it mainly on resting or when still....but holding a cup of coffee or the ophone my hand really starts to hurt and i lose my muscle power and have to swap hands......Does anybody have any helpful ideas or suggestions....i want to ask the doc for relevant tests as ive battled for 4yrs so far and only recently upon not coping anymore went to a different doc who took me seriously and is following up.Thankyou.
Bruce
11-07-2003, 08:31 AM
You are at a higher risk of having parkinsons, if a close relative has been diagnosed with the diseasae.
Bruce
Bruce
virtual_rose
11-07-2003, 10:13 AM
Oh Ok...thanks for answering me :O) sheesh i get conflicting information though.....
I am trying to stay positive and not worry till ive finished all the latest round of tests.
You are at a higher risk of having parkinsons, if a close relative has been diagnosed with the diseasae.
Bruce
I am trying to stay positive and not worry till ive finished all the latest round of tests.
You are at a higher risk of having parkinsons, if a close relative has been diagnosed with the diseasae.
Bruce