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

brittasmom
Posts: 26
Joined: Sun Jun 08, 2014 1:15 pm
Location: Kansas City, MO

Re: New to the forum? post a quick introduction

Post by brittasmom »

Hi Gloria and OT family. This last report from Warren answers a question that I’ve often had. Do other treatments for OT lose effectiveness after a period of time? As many may remember I have been wearing prism glasses since 2014. I had a wonderful experience of OT relief for a year. Then I had laser surgery, broke my glasses, increased the prism strength and tried 4 different prism prescriptions. I have been struggling ever since. But the prism glasses still help my balance and standing time, just not as much. They keep me from falling forward, having weak legs and bumping into doorways. I too have to lean against counters and use my stool on wheels, as before I could stand freely.

I know of four others with OT that have tried prism glasses. After hearing their report and experience, it seems that at some point the effectiveness lessens.

During the process of trying different prism prescriptions and being frustrated by blurred vision, I wore my non-prism glasses. I could see clearly but after 3 days I began to feel my OT symptoms. By the 5th day I was a mess and felt sympathy for all of my OT family. What I understand from my experience with prism glasses: I need a strong prism to help my tremors. But the stronger prism gives me distorted vision. I am now coping with a prism prescription that is not always in perfect focus but helps my balance and tremors enough to make me more comfortable with this crazy disease.

I am looking forward to seeing you in Omaha.

Nancy
vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: brittasmom New to the forum? post a quick introduction

Post by vanna61 »

Hi brittasmom
I read Your post About wearing prism glasse s for treatment of OT but here ( I am in care by an italian neurologist, and i live in switzerland) nobody tolse me about this. Can you explain me?
Thanks a lot
Vanna
brittasmom
Posts: 26
Joined: Sun Jun 08, 2014 1:15 pm
Location: Kansas City, MO

Re: New to the forum? post a quick introduction

Post by brittasmom »

Vanna, you can read all about the prism glasses under Discussion/Topics. There are 3 different Topics starting back in 2013. Go back to page 4.
Nancy
vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: New to the forum? post a quick introduction

Post by vanna61 »

Thank you very much Nancy
This forum is so wide !
I hope you are well , so as all the othets members
CIAO !
Vanna :)
vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: New to the forum? post a quick introduction

Post by vanna61 »

brittasmom wrote: Wed Aug 23, 2017 2:23 pm Vanna, you can read all about the prism glasses under Discussion/Topics. There are 3 different Topics starting back in 2013. Go back to page 4.
Nancy
sorry Nancy, I went to page 4 but I?m not able to find the topic.
can you help me ?
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

Below are links to 3 of the topics about vision, prism glasses and OT:

viewtopic.php?f=1&t=800

viewtopic.php?f=1&t=784

viewtopic.php?f=1&t=709&start=30
vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: New to the forum? post a quick introduction

Post by vanna61 »

so kind of you! :) :) :) i read everything and was so interested!
I really got lost in the forum and couldn't find the topics. Have you any suggestion so can I find my way better next time?
but , more important, I don't understand "what" are prism glasses .One year ago, when I didn't know I have OT, I went to an orthotic here in Switzerland and it seems to me she told something about me having a little exoforia. I have to check out. But anyway, what kind of specialist shuold I go to try this glasses?( It's so frustrating, here in switzerland nobody takes care in my disease, nobody knows, nobody wants to help. How better is to live in a grat country like most of you!!)
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 - With thousands of posts on the forum it can be challenging. The fastest method to research anything on the forum is to search on a word.

If you are using a desktop or laptop computer you can click on the magnifying glass in the topmost menu. Then type in the word and hit return. If you are using a cellphone or other mobil device, look for the menu icon in the upper right of the screen. The menu icon looks like 3 stacked horizontal lines. Click on this menu icon then click on search and then follow the onscreen instructions, enter your search word and then scroll down and click on "search".

screen shots of the desktop search below ;

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vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: New to the forum? post a quick introduction

Post by vanna61 »

Hi Bonnie
Sorry i did not see your post til today
I've been having syntoms for the last 7/8 years but nobody could give a diagnosis ; and anyway i could manage well since i stood 15/20 minutes be forse getting a seat , and felt very good while walking. Then last year I decided to go into the matter, I WANTED to know What it was and so became an odissey of doctors, no one was of minimum help. I felt sickness worstening and had even a week in a hospital because after tryng a vestibolar therapy I was trembling in Every part of my body!! But even in my Swiss hospital neurologist didn't understand. In may 2017 I went in internet and in a french group I found a lady that described exactly what was her life with OT. Since then I knew it WAS that. Went to Italy to a bigger hospital and told a neurologist " I have OT". At first he did not believe me, but I went on and had EMG so he had to confirm. He says he had only one or two persons in his career with OT!
Here in Europe and especially Switzerland is very hard because there is a lot of ignorance in medical class.
I am on clonazepam 0.5x3 each day but is not a Big help.
So sorry for you , I too am very scared of the future .. I live with my 16 old daughter, no family around. Hope in this new therapy , but things arrive much time before in USA than
Here... I wish you the best so as all OT ers
Vanna
Susie
Posts: 4
Joined: Thu Sep 07, 2017 6:07 am
Location: Mornington Peninsula, Victoria, Australia

Re: New to the forum - Hello from Australia

Post by Susie »

Hi Gloria and everyone,
I am 53 years old and my Neurologist first suspected I had OT 7 months ago, although I had first visited him 3 years ago for balance issues and then I developed a tiny tremor a year ago in the fingers on my left hand.
My symptoms had developed slowly over a few years then suddenly became worse overnight, such that I thought I'd had a stroke or something, that was in January 2017.
I never did make the connection myself between standing in one place too long and the debilitating symptoms, I just knew all of a sudden I could hardly manage to do anything without needing a rest afterwards or to lie down. I was very lucky I had an excellent Neurologist but he specialised in ENT so he didn't have the EMG equipment to diagnose OT (he used an app on his iPhone to measure the tremor) but at least he recognised it even though he had never seen it in a patient before. At that point he said my condition was outside of his main area of expertise and he should refer me elsewhere.
I have now found another Neurologist specialising in movement disorders who diagnosed OT about 4 months ago. He prescribed Clonazepam first but even on a low dose I was sleeping like a log, 12 hours, and would press my snooze button sometimes for 2 hours! He has now prescribed Gabapentin. I started on 300mg 3 times a day but it didn't help much. I am now gradually increasing the dose to double that amount to see how I go, hoping not to have any side effects but I'm not sure what they would be.
Unfortunately at my last appointment I was diagnosed with Parkinson's disease too. I was more or less expecting that, there were symptoms I'd had for a while that didn't match OT and the Neurologist had done lots of tests to rule out any other causes.
I have never ever used a forum like this before but you have no idea how goods it feels to talk to someone who understands OT. Both Neurologists and my GP (doctor) have never had a patient with OT before and you can explain it to family and friends, give them information, even do a demonstration (!!) but I don't think they could grasp the impact on everyday life unless they are in your shoes. But then that would apply to lots of health issues, I know. And to hear that there are others in Australia, in Victoria, that live nearby, what a comfort to someone that lives alone and to also to hear that others with OT live alone. All of a sudden I'm not alone!
Thanks everyone for being here and listening,
Susie
chris1948
Posts: 3
Joined: Fri Sep 22, 2017 8:22 pm
Location: Copperas Cove, Texas
Contact:

Introduction and Orthostatic Myoclonus questions

Post by chris1948 »

Hi, my name is Chris Pollock. I live in Copperas Cove, Texas. I'm 68, a 22yr Army veteran and retired. Earlier this year in Feb I suddenly began to uncontrollably stomp my feet. This happens without warning and mostly when I'm doing things like shaving, washing dishes, making my lunch and getting out of my car. I might also note that since Dec of 2013 I've had balance loss issues. My neurologist at the VA as totally given up on me as far as diagnosing any of these issues. Recently I took it upon myself to contact a Movement Disorder Specialist in regards to my 'foot stomping'. He looked at all of the doctors notes from my VA neurologist, my CT/MRI scans of my brain and spine and videos my wife has made of my 'foot stomping'. He did quite a few of the normal neurological tests such as reflex, walk down the hall and so forth. After all of this he said it's possible that I have Orthostatic Myoclonus. I contacted my VA neurologist and let him know what the movement disorder specialist said and asked what tests can be used to diagnose this for sure. His reply was:

"I am not aware of a test that can make a diagnosis of orthostatic myoclonus. Such a diagnosis is rare and is of little value unless it translates into a therapy which brings a cure."

So now I don't know what to do or where to turn. I'm hoping that someone here can point me in the right direction. If there are tests for this I'd like to be able to tell my VA neurologist about them but at times it seems like he doesn't really care much.

I looked at the patient assessment notes on his patient portal this morning. He lists Abnormal Involuntary Movement and Orthostatic Tremor there. He had verbally told me about the possibility of Orthostatic Myoclonus.
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 »

A news article with video has been posted on the KETV Omaha news website:

LINK TO ARTICLE and VIDEO
UNMC leads international research on Orthostatic Tremor

University of Nebraska Medical Center hosted the largest international study on Orthostatic Tremor, a rare, debilitating disease that makes people feel like they're going to fall down every time they stand up.


OMAHA, Neb. —
University of Nebraska Medical Center hosted the largest international study on Orthostatic Tremor, a rare, debilitating disease that makes people feel like they're going to fall down every time they stand up.

On average, patients go nine years before a proper diagnosis.

That is why UNMC's team of researchers invited patients from around the world to learn more about OT and try to find a cure.

"We're not close to that at all, yet. We need to understand the disease first, so then we can find a cure later," said Dr. Diego Torres-Russotto, associate professor and director of UNMC's Movement Disorder Program.

Previously held in 2012 and 2014, this year's OT study group is the largest ever with 85 patients from as far as Australia and Europe.

Participants range from 7 to 87 years old.

Researchers said only one in a million people have Orthostatic Tremor.
chris1948
Posts: 3
Joined: Fri Sep 22, 2017 8:22 pm
Location: Copperas Cove, Texas
Contact:

Re: New to the forum? post a quick introduction

Post by chris1948 »

Thanks for the information, my Movement Disorder Dr. is sending me down to the Baylor College of Medicine in Houston for a 2nd opinion.
Gluehorse
Posts: 2
Joined: Thu Sep 28, 2017 7:09 pm
Location: Minneapolis, Mn

Re: New to the forum? post a quick introduction

Post by Gluehorse »

Hello, My name is Eric Wolf, I am 43 and live in Minneapolis, MN. I was just diagnosed with having OT. I was tested with the EEG and EMG. Symptoms include shaking of hands that start in my shoulders, and when walking, quivering thighs, and shooting pains in the calf's. I have fainted twice, once right in front of my wife, which caused me to go to see a Dr. about this in the first place. After seeing posts on this forum, I feel a little better knowing that this will not kill me, but am a bit worried about how much this will effect my everyday life.
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 »

Eric: I hope the reading of the website will help you understand the symptoms of OT you are having and find what is causing the other symptoms you are having........ Gloria
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