New to the forum? post a quick introduction

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

helen stamas
Posts: 1
Joined: Wed Jun 14, 2017 9:53 pm

Re: New to the forum? post a quick introduction

Post by helen stamas »

Hello, My name is Helen. So glad to have found this Forum. For many yeas I have been in the AFib Forum. It gave me so much information that I could never find on my own.So I am looking forward to the same give and take here. I am 80 yrs old and after reading a Dear Doctor column writer's description of the same symptoms I had with the doctor's response of the diagnosis of orthostatic tremor, I finally was able to follow up with a physiatrist who agreed with the diagnosis but said I had to have a neurologist confirm it. It was confirmed by him. My symptoms had begun several years before that but not recognized by general physicians.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Welcome Helen: Here on the FORUM you will be communicating with a group of wonderful understanding OT people sharing their OT experiences too......Please post more of the history of the onset of your OT symptoms and current ........do you remember how much standing time you had at the beginning of your OT symptoms and the standing time you have now etc. Are you suspicious of a possible cause and why ??????? Remember we must all work together, Gloria

PS: Recently there have been a few trial research programs that are beginning to give some promise in our future.
CCB
Posts: 1
Joined: Fri Jun 16, 2017 4:25 pm

Re: New to the forum? post a quick introduction

Post by CCB »

Hi, I am new to this Forum and have been diagnosed with Orthostatic Tremor. I saw a neurologist on Thursday who diagnosed it straight away and has referred me to a specialist who will carry out more tests to confirm the diagnosis but the consultant I saw was convinced that it was OT. She has started me on a series of Clomazepam which makes me think she must be nearly 100% sure. I noticed my leg tremors about 6 months ago particularly when playing golf and standing still to putt on the green! I had become embarrassed about it and thought my playing partners could see it. When I went to my GP she did various tests and asked if I would want to be referred to a neurologist, I said yes and 4 months later got to see the consultant neurologist. Other things I have noticed: when standing still I feel as if I am falling forward and if queuing have to hold on to something , if there's nothing to hold onto I have to walk away. My tremors start 4 seconds after I have stopped moving, according to the neurologist. I recently had a panic attack and couldn't get on a down escalator and haven't been on one since, I don't know if this is related? Reading the website I think I am lucky having seen the neurologist who diagnosed it straight away. I am female, 60 years old and live in the UK. I am very worried as to what will happen in the future and intend to go armed with a list of questions when I see the specialist. Thank you for letting me use this website to put down in writing what has been going around in my head since the diagnosis. CCB
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Welcome CBC: Thank you for posting your experience with the onset and diagnosing of your OT. Interesting that you first noticed your OT synptoms on a putting green playing golf ...... I did too but that was almost 30 years ago when there was little known about OT and hard to find a correct diagnosis. Here on the website you have alot understanding OT friends, knowlege of life with OT, research and a good place to ask questions. Look forward to your future postings, Gloria
Cheryl Snyder
Posts: 5
Joined: Fri Jun 16, 2017 5:27 pm
Location: Crescent City, FL

New member introduction

Post by Cheryl Snyder »

I am so happy to have found this site and to meet all of you! I was recently diagnosed at the Florida clinical trial, though I have had symptoms for about 5 years. Thank you to Gloria for pulling us together :)

Cheryl
Crescent City, FL
Ocogram
Posts: 1
Joined: Mon Jul 10, 2017 2:14 pm

Re: New to the forum? post a quick introduction

Post by Ocogram »

Hello. I am Barb, 71 years old and live in the Milwaukee, Wisconsin area. I was diagnosed with OT six months ago after several months of "being able to walk, but losing balance when standing". I had researched the Internet and wasn't surprised by the Movement Disorder Neurologist's diagnosis. I find OT to be very frustrating....the things I enjoyed, like cooking, shopping, impromptu chats with neighbors in the backyard, socializing in the lobby after church, concerts, etc. are so very difficult. I now have capsulitis, which is inflammation of the ligament at the base of the toe, so walking is painful. The podiatrist feels this was caused by putting pressure on my toes to keep my balance. I also have daily migraine headaches, which are my biggest challenges. I have many blessings in my life (my kind husband is at the top), and try to focus on those. I am so glad to have found this website!
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Hi Barb: Sorry to hear that OT has entered your life but you now have many new understanding OT friends . About how many minutes do you have before you feel the need to sit down? Part of one of the normal OT symptoms is when in a standing mode our toes curl under trying to grip the ground. In fact at one of our first meetings with Dr. Torres in Nebraska he ask the group of attending OT people how many had toes that griped under on the floor as soon as they stood up??? Everyone one of us with OT raised their hands........As you read on you will read about results of recent research and on going ones too. This coming Sept. there will be a meeting and research in Omaha, look for the details and perhaps you will join us ??????? Gloria
Brat
Posts: 2
Joined: Sun Jul 30, 2017 11:16 pm

Re: New to the forum? post a quick introduction

Post by Brat »

Hello,
I have recently been diagnosed with OT. I only have the tremor in my left leg. Has this been the case for anyone else? Will it eventually be in both legs?
Thanks,
Brat
vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: My name is Bonnie and I was just diagnosed last Friday May 19 2017. I am 66. I have had tremors for about 2 years

Post by vanna61 »

bonniekline100 wrote: Mon May 29, 2017 8:28 pm I think it hit me the worse at work when I had to stand as very quickly I told my client we need to sit and chit chat as I held on to something. I researched the internet and up came Orthostatic Tremors. I knew I had it but of course my friends thought I was crazy and trying to get a doctor to believe me was a real challenge. My own doctor said you been on the internet and yes I have and I know I have this. He referred me to a neurologist who I should not have said what I think I have but of course I did and again did you diagnose yourself ....have you been on the internet. He gave me the wrong pill thought he could work with my dopamine. Sounded good working with my motor skills upstairs but did nothing. Mind you, getting these appointments took time. He referred me to where I am now at The Truong Neuroscience Institute in Fountain Valley Ca. I filled out his paperwork and said nothing just can't stand but one or two minutes then need to start walking. Wasn't going to make that mistake again. He put his stethoscope on my legs and let my husband hear and put the stethoscope on his leg and what a big difference. He just looked at me and said you have a rare disease and I have only had 2 in Florida before you in all my years of practice. It is called Orthostatic Tremors........Vindicated.

Thank you Gloria for being there for me and so many others. The next day I was back in for the EMG tests and I go back in two weeks for more tests. He is a Parkinson's and Movement Disorder doctor who gives speeches all over the world and one heck of a nice man.

He has me on Clonazepam 0.5 3 times a day and I feel good. It has only been since May 19 2017 but my tremors do not seem to be as bad as they were so I will say at this date I feel very lucky and happy. I have retired and live in Eastvale Ca
Kudos Gloria for having the insight to tell your story and help so many of us. One question, how many people have this in the US and the world. I am really curious
vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: New to the forum? post a quick introduction

Post by vanna61 »

Hallo Bonnie
I'm Vanns from Switzerland
You wrote that you have clonazepam 0,5 three Times a day and you are well
Do you mean ' better' or really well?
I take the same and don't have tremors anymore but I feel often tired cannot have long walks, and my life cannot be very active
What About you ?😊 Ciao
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

[quote=Brat post_id=5861 time=1501534640 user_id=2896]
Hello,
I have recently been diagnosed with OT. I only have the tremor in my left leg. Has this been the case for anyone else? Will it eventually be in both legs?
Thanks,
Brat

Questions?????
Welcome Brat: When and how were you given the diagnosis of OT? Were you diagnosed by a neurologist ? What was your Hz ? Yes I believe that we have heard of one or two cases where their OT started in one leg and gradually goes to the other.......but is not very common . At what age did you first noticed your symptoms and were you given any meds?? Is there anything that you suspect might have been the onset of your OT? Gloria
Brat
Posts: 2
Joined: Sun Jul 30, 2017 11:16 pm

Re: New to the forum? post a quick introduction

Post by Brat »

I was given the diagnosis by a neurologist about four months ago. He only did the standard tests by putting things in a hands and with my eyes closed I had to tell him what it was. I had no trouble doing that. He also asked me to walk heal to toe and I could not do it. After that he could see the tremor in my leg. There was no test for Hz. I noticed the tremor about a year and half ago when I was showering. I was not given any meds and was told to come back when it starts in my right leg. I have no idea what started the tremors. Also, my balance is not good and I wear out easily.
My internist has never heard of OT.
I am a 72 year old female from Indianapolis, IN.
Brat (childhood nickname)
Warren H.
Posts: 15
Joined: Mon Mar 13, 2017 9:03 am

OT 6 month update

Post by Warren H. »

Hi Gloria, I'm having a terrible time finding how to create a new update post. I'll let you reconfigure or re-post this if necessary! On Feb 7 & 8, 2017, I had the complete OT treatment at the Univ. of FL in Gainsville. I did not attempt a post last month since there was no significant change. But now there are changes. I'm finding it increasingly more difficult to stand still unsupported. I will almost automatically lean against whatever is near. Example: While brushing my teeth, I don't stand freely but lean up against the bathroom counter. If using the kitchen sink, the same thing. I made myself stand freely after the treatment and it worked rather well, but not so much now. Also, since the treatment, I have not involuntarily stepped backwards until recently. These have been one involuntary slight step backwards - yes, a far cry from the 5 or 6 steps I'd otherwise take before the treatment. I'm increasingly starting to feel a sense of weakness in my lower legs, but not my thighs. I walk nicely without problems but after lengthy time (say two hours) I have to sit down for a few minutes to recover then I'm good to go again. Bicycling is no problem as is water volleyball. The more I exercise and move the better along I get. Sitting around for several hours seems to regress my OT symptoms. My upper body tremors continue (the treatment did not help this) but Primidone does nicely for my arms and hands but useless for my legs. All in all I'm doing far better after the OT treatment, but still have some apparent OT problems.
Warren Sharp in Venice, FL
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Warren: It is so nice of you to report the current statis of your OT Treatment study at the University of Florida but sorry you feel that some of it is starting to lessen downward but still better than before the treatments. I was wondering if you are reporting this information back to the University of Florida and is it a normal result of other OT'ers that took the treatment???????....OT is progressive so maybe your OT symptoms are just doing it's normal downward pace of slowly erasing the good of the treatments ?????? Thanks again for keeping all of your OT friends updated...........Gloria
bonniekline100
Posts: 8
Joined: Sat May 27, 2017 12:52 pm

Re: New to the forum? post a quick introduction

Post by bonniekline100 »

vanna61 wrote: Mon Jul 31, 2017 5:35 pm Hallo Bonnie
I'm Vanns from Switzerland
You wrote that you have clonazepam 0,5 three Times a day and you are well
Do you mean ' better' or really well?
I take the same and don't have tremors anymore but I feel often tired cannot have long walks, and my life cannot be very active
What About you ?😊 Ciao
Hi Vanns

The Clonazepam does make me tired but the morning walk fights through it and I am much better. Now the afternoon unless I am out I am usually ready to lie down for that nap. So if you keep busy the feeling goes away if not I get that nap, I was just diagnosed with Parkinson's last week so I have both now the Primary Orthostatic tremor and Parkinson's and start on a medication next week. I do walk about an hour and started to swim at the gym. I am scared to death one was enough Oh I know what I was going to say I am able to stay in the shower just long enough to wash and wash my hair with holding on to bars with the clonazepam without I pulled in a chair so the clonazepam was priceless.

How long have you had this and how long did it take for the doctors to tell you
Bonnie
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