New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
New report posted on the long-term course of OT - link to more information
Re: New to the forum? post a quick introduction
My name is Dan M and I'm a retired Federal worker who lives in Alexandria, Virginia. I was diagnosed with orthostatic tremor about 7 or 8 years ago at Johns Hopkins hospital outpatient clinic by the famous Dr. Zee on his last year as a practicing neurologist and he recommended klonopin, which made me sleepy and didn't do much. I now take L-Dopa as proscribed by a Georgetown University hospital neurologist and he said that it has quieted the tremor down (although I really don't feel any less shaky on when I stand up).My present young neurologist says that he has 4 patients with orthostatic tremor that he is currently treating. I see him about every 6 months. I was misdiagnosed with Parkinsons disease and a cerebellar lucanar stroke. Like everyone I've read on this site I have trouble standing in long lines and usually avoid crowded stores if I can help it. I was a distance runner but no longer run mainly because of a bad back. But I'm thankful that I can still play about a half hour of doubles tennis before my legs give out :I can walk about 40-50 minutes before my back starts hurting (I'm in my 60's). I use a cane if I know I have to stand for any length of time and I've had to explain to women at singles dances that I can't dance except for a quick dance but I don't think that they understood. I'm sure glad that I've found this site and can communicate with fellow orthostatic tremor suffers.
Re: New to the forum? post a quick introduction
Hi! Dan: What a nice introduction to your new group of friends! Comparing and sharing notes helps identify life experiences with OT. I noticed besides the challenges of the symptoms of OT you also have back pain do you know what is causing it ? In my MANY early years ago of living with the symptoms of OT I was misdiagnosed with Parkinson's too and given all the med's for it and they were not of any help at all !!! Hope you keep going with your sports as long as possible ..... I find walking at a good natural pace is the best exercise of all for OT. Also keep dancing with those gals at a good pace !!!!!!!!! It doesn't matter if they understand or not, that is one of problems that we all experience with OT it is a hard disorder for people to understand , it is hard for us to understand too,
"WE CAN WALK BUT WE CANNOT STAND STILL ???????????????????????? " Looking forward to more of your postings of how you are traveling thru life with OT. All the best, Gloria
"WE CAN WALK BUT WE CANNOT STAND STILL ???????????????????????? " Looking forward to more of your postings of how you are traveling thru life with OT. All the best, Gloria
Re: New to the forum
Hello everyone.
At present I have not had an official diagnosis of OT but my Consultant is fairly certain he has the correct diagnosis for me. This morning I received an appointment for an EMG at Manchester Royal Infirmary on 8 July, wish me luck.
I first realised something was wrong in 2004 when I had to hold on to a colleagues desk when speaking to him, just put it down to too much wine the night before! I gradually realised my legs would shake if I had to stand for more than a few minutes and I would need to lean on something or, better still, sit down. I went to my Doctor in 2008 and was sent to the Balance Clinic at my local Hospital, they did various tests including the Epley then just said' there is nothing wrong with your ears', I continued putting up with it as I thought there was nothing else but last year it had come to the point where I was frightened to go shopping on my own unless I knew it wouldn't be busy and there would be something to lean on. I mentioned it to my Doctor in April 2014 and she sent me to Neurology, I was seen on 6 September and had an MRI scan the same month, came back normal for someone of my age (made me feel like Methuselah). I saw another Consultant on 11 May and that is where we are up to although he did say he had seen someone with OT a few years ago.
Will le you know the result of the EMG.
It is good to know I am not alone (or 'not the only POT in the country')
Mary
At present I have not had an official diagnosis of OT but my Consultant is fairly certain he has the correct diagnosis for me. This morning I received an appointment for an EMG at Manchester Royal Infirmary on 8 July, wish me luck.
I first realised something was wrong in 2004 when I had to hold on to a colleagues desk when speaking to him, just put it down to too much wine the night before! I gradually realised my legs would shake if I had to stand for more than a few minutes and I would need to lean on something or, better still, sit down. I went to my Doctor in 2008 and was sent to the Balance Clinic at my local Hospital, they did various tests including the Epley then just said' there is nothing wrong with your ears', I continued putting up with it as I thought there was nothing else but last year it had come to the point where I was frightened to go shopping on my own unless I knew it wouldn't be busy and there would be something to lean on. I mentioned it to my Doctor in April 2014 and she sent me to Neurology, I was seen on 6 September and had an MRI scan the same month, came back normal for someone of my age (made me feel like Methuselah). I saw another Consultant on 11 May and that is where we are up to although he did say he had seen someone with OT a few years ago.
Will le you know the result of the EMG.
It is good to know I am not alone (or 'not the only POT in the country')
Mary
Re: New to the forum? post a quick introduction
Hello Mary and welcome: It seems like you are on the right track in getting a confirmation of your symptoms. Will be waiting to hear the results. Gloria
Re: New to the forum? post a quick introduction
Hello All
My name is Dave and I have was diagnosed in 2010 as having OT and appeared to have some signs of it in 2008, although I think my high levels of physical activity may hAve masked some of the symptoms. I was highly active in karate working out 4 to 5 times a week for 90 minutes at a time, earning my black belt when I was 50. In the same year I was transferred to Romania for a work assignment with my company and was under significant levels of stress. When I returned in 2009 and during the work assignment I found it was getting increasingly difficult to stand still for long periods of time. I did my own research and found this forum and the symptoms aligned. I was sent by my GP to a neurologist/specialist in movement disorders and based on his assessment and my description he arrived at the conclusion of OT. I had not mentioned that I had also done research. The test that appeared to have arrive at the conclusion was having me stand with bent at the knees and after about 30 seconds the shaking was evident and very uncomfortable. He also called it Subway legs.
Over the past 6 months the tremors seem to be increasing in intensity and I am not able to stand in line for long periods and avoid anywhere that requires me to stand for long periods.
Recently, I was having trouble with sciatic nerve in my back and my doctor gave me Gabapentin and the equivalent of Aleve. While I woke up fairly tired, I was able to get a reasonably good night sleep and I noticed that the OT seemed to have diminished the next morning , especially noticeable in the shower. It seemed to have a lasting affect for about 6 hours. I have been taking one Gabapentin before bed time and it still appears to be helping with the OT's.
Has anyone else had experience with Gabapentin helping? How about long term side-effects?
Any feedback is appreciated
Thanks All!
My name is Dave and I have was diagnosed in 2010 as having OT and appeared to have some signs of it in 2008, although I think my high levels of physical activity may hAve masked some of the symptoms. I was highly active in karate working out 4 to 5 times a week for 90 minutes at a time, earning my black belt when I was 50. In the same year I was transferred to Romania for a work assignment with my company and was under significant levels of stress. When I returned in 2009 and during the work assignment I found it was getting increasingly difficult to stand still for long periods of time. I did my own research and found this forum and the symptoms aligned. I was sent by my GP to a neurologist/specialist in movement disorders and based on his assessment and my description he arrived at the conclusion of OT. I had not mentioned that I had also done research. The test that appeared to have arrive at the conclusion was having me stand with bent at the knees and after about 30 seconds the shaking was evident and very uncomfortable. He also called it Subway legs.
Over the past 6 months the tremors seem to be increasing in intensity and I am not able to stand in line for long periods and avoid anywhere that requires me to stand for long periods.
Recently, I was having trouble with sciatic nerve in my back and my doctor gave me Gabapentin and the equivalent of Aleve. While I woke up fairly tired, I was able to get a reasonably good night sleep and I noticed that the OT seemed to have diminished the next morning , especially noticeable in the shower. It seemed to have a lasting affect for about 6 hours. I have been taking one Gabapentin before bed time and it still appears to be helping with the OT's.
Has anyone else had experience with Gabapentin helping? How about long term side-effects?
Any feedback is appreciated
Thanks All!
Re: New to the forum? post a quick introduction
Hi! Dave:
I'm glad you found our OT COMMUNITY FORUM where you were able to align your symptoms as possible OT and then were able to seek out the proper diagnosis of OT. You are right staying as physically fit as possible is the best thing to do. Times of stress do exacerbate our symptoms so I try to keep stress under control as much as possible. You mentioned you were stressed when you were transfered to Romania for a work assignment.
I see you forgot to leave your location in your PROFILE when you registered. Please GO BACK to your PROFILE where you registered and leave your general location there ( just state and country is enough) . This is important because it helps to show the geographic locations of OT and possibly there might be someone nearby that might have OT that you might be able to meet so having OT will not be so lonely.
I have been using Gabapentin as my only med since 2000, I was told it is a flush thru medication and have not had any side affect problems however it only helps to moderate my tremors and it does not make them go away completely however there is no known med that I have found that is able to do that. I divide my doses 3 times during the day.
Looking forward to your continuing postings, Gloria
I'm glad you found our OT COMMUNITY FORUM where you were able to align your symptoms as possible OT and then were able to seek out the proper diagnosis of OT. You are right staying as physically fit as possible is the best thing to do. Times of stress do exacerbate our symptoms so I try to keep stress under control as much as possible. You mentioned you were stressed when you were transfered to Romania for a work assignment.
I see you forgot to leave your location in your PROFILE when you registered. Please GO BACK to your PROFILE where you registered and leave your general location there ( just state and country is enough) . This is important because it helps to show the geographic locations of OT and possibly there might be someone nearby that might have OT that you might be able to meet so having OT will not be so lonely.
I have been using Gabapentin as my only med since 2000, I was told it is a flush thru medication and have not had any side affect problems however it only helps to moderate my tremors and it does not make them go away completely however there is no known med that I have found that is able to do that. I divide my doses 3 times during the day.
Looking forward to your continuing postings, Gloria
Re: New to the forum? post a quick introduction
When I started reading about OT I was amazed to really know what I had for over 20 years. I have been diagnosed with ET but knew from research that wasn't at all what I was experiencing. From reading the symptoms I also have OT plus..the symptoms have increased & worsened over the years but I am still active just very standing challenged. I am 68 & had mild symptoms of this starting in my mid 40's. I take propranolol but have never tried anything else. My doctor has never seen a patient with OT & is going to do some research to learn about it.
Re: New to the forum? post a quick introduction
Katy: It is always interesting how there are quite a number of people like you who were able to put together the correct diagnosis by searching and comparing symptoms . I'm glad you did not accept ET as your diagnosis but there was a time when unfortunately many were mis-diagnosed with ET. Have you had a EMG ? It is always a good thing to do as part of the diagnosis info for OT. I'm pleased to hear that you have "a doctor who is going to do some research to learn about OT"......please update how things are going with you, Gloria
Re: Diagnosis
Hi
Further to my earlier post, I had an EMG this morning and the diagnosis of Orthostatic Tremor was confirmed.
Further to my earlier post, I had an EMG this morning and the diagnosis of Orthostatic Tremor was confirmed.
Re: New to the forum? post a quick introduction
Hi
Now that i have my confirmed diagnosis, I am waiting for an appointment with my Consultant, I have one for November 2015 but he did say he may send for me before then. What I am wondering is about medication, I have read about the two main types prescribed but do they have to be taken continuously or can you take them when you know you are going to be likely to have 'shaky legs', eg, having to stand in church or at a gathering? At present, I manage around the house and always use a shopping trolley at the supermarket and lean against the belt at checkout. I know this may sound silly but as I have don't know anyone else with OT (other than yourselves) I don't know who to ask. Thanks, in advance, for your help.
Now that i have my confirmed diagnosis, I am waiting for an appointment with my Consultant, I have one for November 2015 but he did say he may send for me before then. What I am wondering is about medication, I have read about the two main types prescribed but do they have to be taken continuously or can you take them when you know you are going to be likely to have 'shaky legs', eg, having to stand in church or at a gathering? At present, I manage around the house and always use a shopping trolley at the supermarket and lean against the belt at checkout. I know this may sound silly but as I have don't know anyone else with OT (other than yourselves) I don't know who to ask. Thanks, in advance, for your help.
Re: New to the forum? post a quick introduction
Hi! Mary: Your question [ " What I am wondering is about medication, I have read about the two main types prescribed but do they have to be taken continuously or can you take them when you know you are going to be likely to have 'shaky legs', eg, having to stand in church or at a gathering?" ] ......... I have worked out a schedule of time that I take my medication the same everyday since I do not know when I will be confronted with a situation that requires me to stand still and my OT will contract my leg muscles and tremors will begin. I have had OT for 30 years and in the beginning I took a lessor quantity of course but since OT is progressive I have had to adjust my time schedule of frequency of taking my med's as well as increasing the dosage. Everyone is in a different stage of OT and needs to develop their own personal schedule and make changes when needed. Gloria
Re: New to the forum? post a quick introduction
Hi, I am new to the forum. I do not have a formal dx. yet, but have had symptoms for 6 years. My tremor was not present during the two emg's I had. I was sure I had Parkinsons, but 3 different doctors say "no." I have no other Parkinsons symptoms and the docs say by now (6 years later,) I would be showing some because Parkinsons is progressive.
My tremor is only in one leg. Has anyone ever heard of OT being only in one leg?
Also, my tremor is never visable to the naked eye. Hence, my site name.
Any info on OT tremor being one sided would be appreciated.
Lots of anxiety not having a diagnosis.
Thank you and nice to meet all of you.
My tremor is only in one leg. Has anyone ever heard of OT being only in one leg?
Also, my tremor is never visable to the naked eye. Hence, my site name.
Any info on OT tremor being one sided would be appreciated.
Lots of anxiety not having a diagnosis.
Thank you and nice to meet all of you.
Re: New to the forum? post a quick introduction
Hello Members
My name is Marcia. I live with my husband & Napoleon, my 8 year old somewhat plump Golden Retriever in the Adelaide Hills.
I spend most of my spare time in the garden, & painting.
I suspect I have had OT for some time, but it became totally unmanageable last Year. Doctors were unable to give me answers to my symptoms, so I Googled "cant stand still without shaking", & arrived at OT.
Eventually arriving at Royal Adelaide Hospital Neurology, it was EMG confirmed, I had OT to legs, torso & arms.
I have been put on Gabapentin, 800 mg per day in 3 doses. A neurologist who prescribed the medication, did not appear to be to eager to offer another appointment, which I must admit left me worried & afraid.
I have been on the medication for just over a month, so I suppose it is early days, but I have noticed an easing of the tremor, but now have noticed an inner torso tremor is felt most of the time, is it the OT, Gabapentin, or something else?
Hoping to get some answers in a couple of months. Very happy to have found this site
Marcia
My name is Marcia. I live with my husband & Napoleon, my 8 year old somewhat plump Golden Retriever in the Adelaide Hills.
I spend most of my spare time in the garden, & painting.
I suspect I have had OT for some time, but it became totally unmanageable last Year. Doctors were unable to give me answers to my symptoms, so I Googled "cant stand still without shaking", & arrived at OT.
Eventually arriving at Royal Adelaide Hospital Neurology, it was EMG confirmed, I had OT to legs, torso & arms.
I have been put on Gabapentin, 800 mg per day in 3 doses. A neurologist who prescribed the medication, did not appear to be to eager to offer another appointment, which I must admit left me worried & afraid.
I have been on the medication for just over a month, so I suppose it is early days, but I have noticed an easing of the tremor, but now have noticed an inner torso tremor is felt most of the time, is it the OT, Gabapentin, or something else?
Hoping to get some answers in a couple of months. Very happy to have found this site
Marcia
Re: New to the forum? post a quick introduction
Marcia: You managed a commendable route in finding your diagnosis of OT. You have probable read on the site that I have used Gabapentin for many years. There are no medications that make the tremors go away completely but I am thankful that Gabapentin can be easing for the tremors and I know when I have forgotten to take my dose. Also, to quote the following from your post [ " A neurologist who prescribed the medication, did not appear to be to eager to offer another appointment, which I must admit left me worried & afraid. " ] Perhaps his response is because OT is a slow progressive disorder and it will be up to you to report into him when you notice any changes or the need to increase your medication etc. and would like to make an appointment with him. In the meantime you have a large number of OT friends here on the website to ask questions for help with everyday living with OT.
Keep us posted, Gloria
Keep us posted, Gloria