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.

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cpadgett2
Posts: 5
Joined: Sun May 09, 2010 3:13 pm
Location: florida
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Re: New to the forum? post a quick introduction

Post by cpadgett2 »

Warren H. wrote:Four month report: On Feb. 7 & 8, 2017, I had the repetitive magnetic stimulation therapy at the Univ. of FL in Gainsville. After 4 months, standing still does nicely but after a while I become uncomfortable standing still - my legs start to feel weak. All I have to do is move around somewhat voluntarily and I can shake the feeling off. I find walking briskly for 30 minutes each morning helps greatly otherwise I start to feel cramps in the calves of my legs. Also after standing for a greater lengths of time - say one hour - even moving around, I start to feel uncomfortable and must sit down for a few minutes then I'm good to go again. Note since the therapy I have not stepped or moved involuntarily which is a total improvement over my prior condition. Warren Sharp in Venice, FL
I also went through the study at Shands. I have felt better and have increased my standing time. I am walking better and can walk further than before the study. I am waiting to read about how the study evaluated those that participated. Marcia
vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: New to the forum? post a quick introduction

Post by vanna61 »

Hallo, my name is Vanna and i live in Switzerland in the Italian speaking part, so you will excuse my English. I'm 56 years old and suffer from this strange syntoms since 7-8 years. But until last year I could live with, because the disease started after half an hour, ..so I didn't pay much attention. I went to some doctor, some said it's the pressure, other you don't do gymnastic etc... all sort of insensateness everyone of you has tried I suppose.
last year things went suddenly worst and I cannot stand a few seconds now...I have had many personal troubles, very strong pains regardind my daughter in last four years and sometimes I thought it was the stress... Still now that I know I have OT, I wonder if the quickness of worsting can be related to my sorrows ? :?:
Anyway, during this last year I went to several specialist, osteopatics, postural people, took plantar for my shoes, changed glasses ... nothing happened of course. Neurologist made magnetic resonance ande everyone told i had NO NEUROLOGICAL DISEASE. I was so tired and lacking confidence in all medical class. Some week ago I went on the web and told me I MUST find something... in maybe ten , fifteen minutes I found the name of my disease!! I went immediately to a big hospital in Milano, Italy, and told the doctor what I THOUGHT I had. After some days he made an electromiography and said I am compatible with this disesae, but he had seen in his career only two more person with OT. I HAD MY DIAGNOSIS BY MYSELF, in practice... I have to take RIVOTRIL but only since a few days, at the moment no effects.
I'm so sad now. I always hoped that i would have recover one day and now I have to deal with a strange , rare, unhealing disease.. that no one knows here where I live and I have no one with OT in the nearby to talk of this ...
I hope to find here some friendful voice. lot of good thoughts for you

Vanna
DEEmou
Posts: 21
Joined: Thu Mar 31, 2016 2:53 pm
Location: Northern Ireland

Re: New to the forum? post a quick introduction

Post by DEEmou »

Dear Vanna, I feel so sad for you as you sound so alone, please don't feel this way, now you have been diagnosed you will find many new friends on this forum who fully understand everything you are going through,please stay strong. Sending best wishes to you. DEE.
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: New to the forum? post a quick introduction

Post by admin »

Hi Vanna

So sorry this is a difficult time, hopefully this forum and its members will be of some support to you.

Wishing all the best,
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 Vanna: Here on the forum you have a LARGE group of OT friends to communicate with and perhaps can help reduce the stress you are feeling. Keep us posted, Gloria
bonniekline100
Posts: 8
Joined: Sat May 27, 2017 12:52 pm

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 bonniekline100 »

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
gloria
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Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Bonnie : Happy you found the website and you now have a large audience of OT friends to discuss this hard to understand neurological disorder in our brain. However when you have OT and people see you walking and you have told them you can not stand......they might still give you a funny look !!!!!!!!!! I'm proud of you and your determination to learn about living with OT symptoms so keep on searching the website . You will read about a very recent successful Florida Clinical trial. We are having a meeting in Omaha in September, perhaps you might like to attend info on site too. Thanks for joining with us , Gloria
MayPhillips
Posts: 2
Joined: Fri Apr 21, 2017 7:21 am

Re: New to the forum? post a quick introduction

Post by MayPhillips »

Hello
My name is may Phillips and I have had a tremor in my legs for a couple of years. I also have a mild essential tremor in my hands. I am interested in the research that is going to be held in Nebraska - how do I register? So glad to have found this group.
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: New to the forum? post a quick introduction

Post by admin »

Hi May

Welcome to the forum. For more information about the Nebraska research and meeting you can click on the following link:

Omaha Nebraska OT Meeting and Research

and email Nina – ndavis6@sbcglobal.net
She can give you additional information.

Additional information about the meeting, hotel, dinners etc. can be found here - LINK

all the best.
vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: New to the forum? post a quick introduction

Post by vanna61 »

Hallo this is Vanna again
How do Rivotril workshop with Your syntoms ? do you have to take progressively greater doses or once you find the right posology you can breathe for a while ?
Warren H.
Posts: 15
Joined: Mon Mar 13, 2017 9:03 am

Re: New to the forum? post a quick introduction

Post by Warren H. »

Five month report: On Feb 7 & 8, 2017, I had the clinical trial treatment at the Univ. of FL in Gainsville. Little has changed since my Month 4 report except that standing (moving or not) is becoming somewhat more difficult. I'm becoming increasingly more uncomfortable standing. "Uncomfortable" is not a very good description; it is a combination of a feeling of weakness in my lower legs and a slight muscular cramping feeling. I'm standing still for shorter periods of time but can move voluntarily and usually shake off any feeling. Note that I'm not involuntarily moving like I used to. My upper body tremors, which were not affected by the treatment, seem to be increasing slightly, especially while standing. I still have problems but not like I used to! Warren in Venice, FL
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: New to the forum? post a quick introduction

Post by admin »

Hi Warren

Thank you for the update, glad to hear that you are doing well. For anyone wanting to read Warrens full report you can find it > HERE
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: You are giving all who live with OT in our lives a sense that maybe in time your updating reports will give clues for future study. Thanks and will look forward to your continued reports. Gloria
Nikki
Posts: 1
Joined: Mon Jun 12, 2017 12:35 am

Re: New to the forum? post a quick introduction

Post by Nikki »

Hello my name is Nikki and I live in Kenai Alaska. I was diagnosed May 18, 2017 with Primary Slow OT by a neurologist who specializes in movement disorders in Anchorage. He confirmed the diagnosis with a EMG that disclosed a tremor at 5 HZ exclusively with standing. I have a history of increasing imbalance/instability over the last seven years with episodes of shaking legs which increased both in intensity and frequency quite a bit this last year. Sometimes upon standing it is so severe I cannot take a step and need to sit immediately. I am otherwise healthy and exercise daily to maximize the strength in my legs. I did have a flu over a year ago that caused a 6 month battle with cerebellitis. After six months the ataxia from that resolved but the leg shaking became worse. The doctors did a full ataxia blood workup, MRI, CT scan and a PET scan that ruled out all the other possible causes and thus I was referred to a neurologist. That one did an EMG when I was laying down and called it a polyneuropathy with axonal features although I have no physical symptoms of neuropathy. So I got a referral from my primary care doctor to see the movement disorder specialist. I can only stand less than a minute before my legs start shaking now. At this point I have to sit to shower and lean on the counter to brush my teeth. Dr. Glass explained that because my tremors were slow I would have more trouble walking even when walking quickly. He prescribed Sinemet which so far has not helped at all. He said Clonazepam was the next medication he would try. I am waiting to hear back from him at this time. I guess I am hoping to get input from anyone else who also has Slow OT. In the mean time I continue to get out and do as much as I can by myself, Any other folks with Slow OT out there?
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 »

Nikki : Welcome to the website and hope you get a response from others who might suffer with Slow OT . All the best , Gloria
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