LINK TO Omaha Topic
you can also access the topic directly from the home page
New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
In preparation for the upcoming meeting in Omaha Sept 22-26, a new topic has been started (Link below) for anyone that would like to discuss the event. This topic is for anyone whether you are attending the meeting or not. Everyone is welcome to contribute their thoughts, it can be about the weather, the food, or people you have met, or just wishing everyone a good trip. Anything goes
LINK TO Omaha Topic
you can also access the topic directly from the home page
LINK TO Omaha Topic
you can also access the topic directly from the home page
Re: New to the forum? post a quick introduction
I joined your forum in August, shortly after my daughter found your website, and for the first time in twenty years, my 'condition' had a name. I immediately printed out what she found and took it to my physician. He did not want to prescribe anything without research on something he had never heard of. It took a month for him to get back to me, and give me a referral to a neurologist. It took another month to get an appointment with the neurologist, whom I see tomorrow. He has two other patients with OT. I have had appointments with other specialists, physical therapy, injections in my feet, brain scans, etc. etc. and no one has known what to do with me. My balance is getting worse, and it is hard for me to do normal things anymore, so I am hopeful I can get a medication that will help. I joined a fitness club, but cannot walk the treadmill anymore, because I can't get off when I am done walking:) I will let you know my progress. I am just so very grateful I am not alone in this, and have all of you to share experiences with.
Donna
Donna
Re: New to the forum? post a quick introduction
Jackson, Wi. I'm in Glendale and I know a lady in West Bend with OT. And one lady in Port Edwards Wi. I guess there are a few of us around. Where are you seeing the neurologist? I go to Froedtert.
Re: New to the forum? post a quick introduction
Donna & Nin & All: Donna I know how it feels to at last find a name for your OT symptoms and that you will be seeing a neurologist to confirm . This is a great part of our history of OT to be searching for quite a period of time for a diagnosis therefore spreading OT awareness is necessary to fight this continuing battle. You will find lot's of coping skills on the website and will create some of your own to fit your life style......please share yours with your new OT friends on our OT Community Forum. I always wish EVERYONE when registering on the forum will post their location in their Profile as you did because this way people like Nin who saw the location you posted was able to report to you that she and two other OT people live within a reasonable distance from each other. This is always great news knowing there are other OT people that you can possibly meet-up with to help to wipe out some of the loneliness of OT. I recommend everyone who has registered on the forum but DID NOT give their location will go back to their Profile and do so. Thanks Donna & Nin......please keep us posted,, Gloria
Re: New to the forum? post a quick introduction
I had a very satisfying appointment with my new neurologist, who verified that my condition is, indeed OT. He prescribed Clonazepam, as so many of you have taken. Starting on a very low dose, going to gradually increase it. I had seen two other neurologists that 'didn't know what to do with me", and I indicated I wanted to send them print outs of what my daughter had found in your forum, to 'educate them'. My new doc said he is in contact with them, and would see that they got the information.....Thank you for being here.
Donna
Donna
Re: New to the forum? post a quick introduction
Hi everybody here !
MEDICAL WANDERING FOR 18 YEARS BEFORE BEING POT DIAGNOSED !
I’m CRISTEL from France. 69 years old soon, married, 3 children and 4 grand-children.
Year 1996 when I was 50 years old, once when doctor took my blood pression in stand-up posture, I began to feel tremors in my two legs , each time I saw him it was the same. Every time he said me : “don’t be afraid !” but I was not afraid at all by him .
At long, he said me it was nothing else than “legs without rest” ! But that goes on each time a doctor took my blood pression stand up.
This doctor stopped working , and I must find another doctor. Once I told him about these tremors when I stand up unmoved and he just laughed !
Years went on and tremors also more and more, and became difficult to manage. My tremors didn’t interest my doctor. So I did not tell him about them during a long time.
Year 2008 I was several days in hospital cause one morning I could not walk when out of my bed, and felt I was going to fall ! I met a Neurolog and I had a lot of examinations and an ELECTROMYOGRAM only when sitting. The results were good and he wrote as results : no neurologic problems, Mrs Cristel is under stress !!!
I knew I was not under stress, and I came back home, without answer to my legs tremors more and more important and unsteadiness each day.
So I began to search by myself 3 years ago only. And I found finally on Orphanet website that all my symptoms checked with P.O.T. and I asked my doctor to consult a Neurolog to get an ELECTROMYOGRAM when stand up ,in 2011. It was the second Neurolog I met in the same hospital, and he didn’t know P.O.T. so I explained him with Orphanet documentation, and with the result 12 Hz he wrote I was touched by P.O.T. but he could not help me. I went back home and continued to search !
This year 2014, tremors worsened and I decided to meet again the first Neurolog. He remembered my hospitalization in 2008 and listened me. He said I was not touched by P.O.T just in looking me, without examination ! I insisted and obtained finally a new ELECTROMYOGRAM stand-up.
The result : 16 Hz a beautiful P.O.T. said the Neurolog who was another one, the third !
So I came back home, with Rivotril 6 to 8 drops I take only from time to time when I know I ‘m going to stay a long time stand up out of home.
I have been waiting during 18 years before being diagnosed !
I cannot make a lot of things at home, I never go alone out of home, but I know now what illness I have.
My doctor never asked me about my P.O.T. !!! and nevertheless he received the result of ELECTROMYOGRAM !
Next year 2015 I’ll meet again my first Neurolog (it’s very long to obtain , quite one year to wait an appointment) and he’ll meet me as the first P.O.T. person during his service ! and I hope he will accept I’ve been touched by P.O.T. this time !
My appointment is on May 2015… to be continued…
I’ll tell you about further.
Thanks a lot for your website and OT. Forum, very interesting.
Kind Regards,
CRISTEL from France
MEDICAL WANDERING FOR 18 YEARS BEFORE BEING POT DIAGNOSED !
I’m CRISTEL from France. 69 years old soon, married, 3 children and 4 grand-children.
Year 1996 when I was 50 years old, once when doctor took my blood pression in stand-up posture, I began to feel tremors in my two legs , each time I saw him it was the same. Every time he said me : “don’t be afraid !” but I was not afraid at all by him .
At long, he said me it was nothing else than “legs without rest” ! But that goes on each time a doctor took my blood pression stand up.
This doctor stopped working , and I must find another doctor. Once I told him about these tremors when I stand up unmoved and he just laughed !
Years went on and tremors also more and more, and became difficult to manage. My tremors didn’t interest my doctor. So I did not tell him about them during a long time.
Year 2008 I was several days in hospital cause one morning I could not walk when out of my bed, and felt I was going to fall ! I met a Neurolog and I had a lot of examinations and an ELECTROMYOGRAM only when sitting. The results were good and he wrote as results : no neurologic problems, Mrs Cristel is under stress !!!
I knew I was not under stress, and I came back home, without answer to my legs tremors more and more important and unsteadiness each day.
So I began to search by myself 3 years ago only. And I found finally on Orphanet website that all my symptoms checked with P.O.T. and I asked my doctor to consult a Neurolog to get an ELECTROMYOGRAM when stand up ,in 2011. It was the second Neurolog I met in the same hospital, and he didn’t know P.O.T. so I explained him with Orphanet documentation, and with the result 12 Hz he wrote I was touched by P.O.T. but he could not help me. I went back home and continued to search !
This year 2014, tremors worsened and I decided to meet again the first Neurolog. He remembered my hospitalization in 2008 and listened me. He said I was not touched by P.O.T just in looking me, without examination ! I insisted and obtained finally a new ELECTROMYOGRAM stand-up.
The result : 16 Hz a beautiful P.O.T. said the Neurolog who was another one, the third !
So I came back home, with Rivotril 6 to 8 drops I take only from time to time when I know I ‘m going to stay a long time stand up out of home.
I have been waiting during 18 years before being diagnosed !
I cannot make a lot of things at home, I never go alone out of home, but I know now what illness I have.
My doctor never asked me about my P.O.T. !!! and nevertheless he received the result of ELECTROMYOGRAM !
Next year 2015 I’ll meet again my first Neurolog (it’s very long to obtain , quite one year to wait an appointment) and he’ll meet me as the first P.O.T. person during his service ! and I hope he will accept I’ve been touched by P.O.T. this time !
My appointment is on May 2015… to be continued…
I’ll tell you about further.
Thanks a lot for your website and OT. Forum, very interesting.
Kind Regards,
CRISTEL from France
Re: New to the forum? post a quick introduction
I am one week now on the Clonazapam (low dose) and feel nothing different. Any advice on when I can expect to see any improvement?
Donna
Donna
Re: New to the forum? post a quick introduction
Hello CRISTEL:
Welcome new OT friend from France, you are now a member of a great OT COMMUNITY FORUM where you will find a new group of friends who really understand what it is like to live with OT. Thank-you for sharing your OT experiences before and after you were finally diagnosed. It rings a "common history" for most of us. You have found a place where we learn from each other. Also by posting our OT experiences we are a source where the medical community will have better understanding of our symptoms of what is working for us and what does not.
I look forward to reading more of your input on the Forum.
Your OT Partner, Gloria, New Jersey, USA
Welcome new OT friend from France, you are now a member of a great OT COMMUNITY FORUM where you will find a new group of friends who really understand what it is like to live with OT. Thank-you for sharing your OT experiences before and after you were finally diagnosed. It rings a "common history" for most of us. You have found a place where we learn from each other. Also by posting our OT experiences we are a source where the medical community will have better understanding of our symptoms of what is working for us and what does not.
I look forward to reading more of your input on the Forum.
Your OT Partner, Gloria, New Jersey, USA
Re: New to the forum? post a quick introduction
Hello Gloria !
thanks a lot.
2 of my french OT friends are going to come on OT forum soon. Their name is Marie47 and Katia
Regards
CRISTEL
thanks a lot.
2 of my french OT friends are going to come on OT forum soon. Their name is Marie47 and Katia
Regards
CRISTEL
Hello,
My name is Katia, I'm 50 years old and I live in France.
First signs of OT appeared in May or June 2008. I have been oraly diagnosed by a neurologist in February 2012. I have had an EMG in July 2014, the result (11 and 13 hrz) confirms OT.
I have been taking clonazepam since February 2009, it helps with tremors.
Have a nice day and sorry for my bad english.
My name is Katia, I'm 50 years old and I live in France.
First signs of OT appeared in May or June 2008. I have been oraly diagnosed by a neurologist in February 2012. I have had an EMG in July 2014, the result (11 and 13 hrz) confirms OT.
I have been taking clonazepam since February 2009, it helps with tremors.
Have a nice day and sorry for my bad english.
Re: New to the forum? post a quick introduction
Donna, I take clonazepam and can't say that I noticed a lot of difference with it except when I've gone down or stopped it. Then my tremors get worse. For me I think it works slowly, but for some it doesn't work at all. I guess you'll have to try it for awhile and maybe go up in it a bit to see if that helps, and if you don't think so, go back down slowly and see if you notice anything.
Re: New to the forum? post a quick introduction
Hello Katia: Thank you for joining our OT community of friends . No need to apologize for your English we understand. Remember OT has no borders and we have heard from OT people in 35 countries. We are all sharing all we can about our everyday life with OT and changes we have had to make as well. Enjoy your new understanding friends and we will look forward to your postings, Gloria
New to all of this.....
Greetings from the Mile High City of Denver, Colorado,
I am brand new to all of this. Recently diagnoses by 3 seperate neurologists. (Love them all by the way) I've known for some time now that something was very wrong, but was too afraid to see a doctor. I spent about 2-3 years hiding my symptoms from husband, children, co-workers, etc. Then it all came out during an outdorr family photo shoot that my daughter had planned during her leave home from the Army. My tremors are extremely violent. There was no more hiding anything. Once I began testing and seeing doctors, I found that although I still feel embarassed and sometimes even ashamed of this disorder, now that people know some of what I go through every day, I feel better about it. As I said before, I'm very new to this. I was only diagnosed a few months back. I'm seeking advice, information, help if you will, for a further understanding of this. Any info would be greatly appreciated! I look forward to learning with you all!
Thanks, Lfrasher
I am brand new to all of this. Recently diagnoses by 3 seperate neurologists. (Love them all by the way) I've known for some time now that something was very wrong, but was too afraid to see a doctor. I spent about 2-3 years hiding my symptoms from husband, children, co-workers, etc. Then it all came out during an outdorr family photo shoot that my daughter had planned during her leave home from the Army. My tremors are extremely violent. There was no more hiding anything. Once I began testing and seeing doctors, I found that although I still feel embarassed and sometimes even ashamed of this disorder, now that people know some of what I go through every day, I feel better about it. As I said before, I'm very new to this. I was only diagnosed a few months back. I'm seeking advice, information, help if you will, for a further understanding of this. Any info would be greatly appreciated! I look forward to learning with you all!
Thanks, Lfrasher
Re: New to the forum? post a quick introduction
Hi there . My name is Joanna and I have been diagnosed with OT thankfully it only took 3 separate doctors visits begging the last dr to write to the neurologist . With my condition unfortunately I fall so showers are out now (having had a couple of bad falls) so it's a daily bath ! (Which I now enjoy - see it as a luxury) I have set up my house specifically to help me cope as slowing down or even stepping over can bring on the shakes ! The neurologist noticed it has spread to my trunk and arms and measured the frequency in both my legs and arms ! I am extremely fit and otherwise healthy. I have had to give up my hiking as had several bad falls but I am perfectly capable and frequently do 10 - 20 k walks on easier tracks (goat mountain tracks are out) when we stop for a break I just always sit ! Shopping is quite difficult but supermarket trolley is a wonderful tool as are my knees ! I crouch to my knees frequently and at home often crawl ! I am just so relieved to be able to put a name to my disorder and belong to a group such as this x thank you all !
Re: New to the forum? post a quick introduction
Hello Joanna: Sorry to hear you were falling so much but turning it into a luxury sounds good to me. The general profile of most OT people is that we feel like we are going to fall but seldom do. You are still new with OT challenges and learning coping skills to fit your needs is an on going process. The longer I live with OT the more I learn my extremes to avoid. I try to find a place to sit before my legs tremor and feel uncomfortable to avoid the emotional stress that happens. You are working thru it very well so please keep us posted. All the best, Gloria