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

LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: New to the forum? post a quick introduction

Post by LMP1 »

Hello Maire
Welcome to this great site - there's a lot of support here.
As you will see, I live in New Zealand, but I do know that there is quite a large group of OTers in Britain. They have links to the UK National Tremor Foundation, so if you go through that website you will find contacts who will be able to advise you on the meetings that they already have annually.
Best of luck
Lynette
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: New to the forum? post a quick introduction

Post by MaureenB »

Hi Marie

I live in Southport and have not met any O T Sufferer.
My husband is having some treatment at present, however i will watch the site to see if others contact you with a view to having a meeting up North at some point .
Regards Maureen
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 »

Hello Marie: We have a large group of registered members from the UK here on the website and most of them have said they have not met another OT person from the UK and probably would be interested in having a get-together/meeting. Do you have any tentative ideas of how you would like to arrange a meeting? As I have said many times on the website from experience " get-togethers/meetings are the best medicine we have" !

Gloria
Terry
Posts: 12
Joined: Wed Apr 02, 2014 10:46 pm
Location: Nundah, Brisbane, Queensland, Australia

Re: New to the forum? post a quick introduction

Post by Terry »

Hi. My name is Terry and I am from the Sunshine Coast in Queensland, Australia. I self-diagnosed with OT about 5 years ago and was prescribed Clonazepam by my GP which initially helped my symptoms. However, lately, following total hip replacement surgery, my situation has been getting worse. Like many others, I am unable to stand in line anywhere, and when I tried to resume playing golf on Wednesday, I was a tad shaky. In the past, I have been taking my meds at night, but was wondering whether it might be better to take them progressively during the day. Any advice would be appreciated. Cheers. Terry.
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 »

Terry: Thank you for registering and posting your experience with OT. You questioned about the timing of taking your meds. I take my meds starting first thing in the morning, noon time and just before going to bed. I have found that it is during the day that my OT symptoms are challenged the most, the one before going to bed is to calm me from any remaining stress of the day. However, I take Gabapentin and you take Clonazepam so all questions about your medication should be discussed with your doctor. Gloria
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

spring cleanup for the website

Post by admin »

If you haven't visited in awhile, the website received a new coat of paint and some spring cleaning. It should also play better with your iPhones, iTablets and Telegraph machines :wink:

www.orthostatictremor.org

Image
PenelopeLawry
Posts: 1
Joined: Tue Apr 22, 2014 5:11 pm

Re: New to the forum? post a quick introduction

Post by PenelopeLawry »

Hi, I am awaiting conformation of a diagnosis of OT. After many visits to neurologists and neurosurgeons I finally got one who thought my shaking legs on standing, difficulty walking etc. may be OT. I see a specialist in July to confirm or not. I'm not sure when it started but have had problems standing for any length of time for about 9 years and had restless legs for several years before a l4/5 laminectomy 2 years ago. Since then I have deteriorated and had noticeable leg tremors for over a year.

It was actually a remedial masseuse who twigged, feeling the nerves jumping she commented I was experiencing temors not spasms so when the neurologist mentioned it I had already mentally flagged OT as a possibility and the disorder that most made sense of my symptoms. Of course have learnt since then how little is known about it.

I am currently using a walker/rollator as standing and walking has become too difficult. It has made a huge difference. I am also studying a Diploma of Visual Arts, 2nd year, with a wonderful group of women who keep me sane and inspired. Something positive and creative to get me through those difficult days.

I am lucky to live in regional NSW, Australia, a beachside city called Coffs Harbour, in Australia.
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! Penelope: Thanks for posting your interesting sitiuation of slowly putting symptoms together that are showing the possiblity of you having OT. Good that you will be seeing a specialist in July to "confirm or not" what you have. Do you know if your specialist will be giving you an EMG as part of the testing?

In the meantime :
[quote]"I am also studying a Diploma of Visual Arts, 2nd year, with a wonderful group of women who keep me sane and inspired. Something positive and creative to get me through those difficult days."

This is definitely a positive path to follow with any disabiling disorder that becomes part of our life.

Unfortunately OT has had a bad history of not being able to find a diagnosis or receiving a misdiagnosis. Thankfully things are slowly changing in recent years...... Keep us posted, Gloria
babyboomer54
Posts: 7
Joined: Mon Apr 28, 2014 5:54 am
Location: Sandstone Point Qld Australia

Re: New to the forum quick introduction

Post by babyboomer54 »

Hi My name is Denise and I live in Sandstone Point near Bribie Island Queensland Australia. I was diagnosed a few months ago although I have been having symtoms for nearly ten years. I have noticed it has slowly got worse it used to be just while waiting in line for the bus that I noticed it. Now it is more noticeable which is why I wanted to know what it was. I feel that although I know what it is, I really don't know much. I wanted to know if it will get worse and how long before it does as I want to travel. So maybe sooner rather than later?? I have found it a bit embarrassing in certain circumstances like stumbling to get on the train some people think your trying to push in as you reach out for to steady yourself. My specialist put me on Clonzepam but I didn't like being on it as I have heard bad things about addiction and as I have been on anti depression medication for many years I don't want to be reliant on anything else unless I have to. I think this may have had something to do with it as well which doesn't help. The description of symptoms is spot on so its good to know other people feel this way.
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 »

Hello Denise: Thanks for posting your experience with OT. In answer to your question [quote" does OT get worse and how long before it does as I want to travel " ]. Overtime OT is progressive but the timing is different for most. There are many OT people who still travel and most ask for a wheelchair upon entering the airport so they do not get caught waiting in lines etc. Taking a cane chair is helpful too when confronted with unkown situations while traveling. Just going out locally it is a good idea to carry a cane, not that they help walking that much but they do tell the public that you have a problem and generally they will offer help if necessary. I'm pleased you posted your location because we have a good number of wonderful people from Australia and NZ that you will find if you look thru the Members' pages of the website. Most medications given for OT do not relieve symptoms completely . An OT person at this point in time, must work with their neurologist to find what works best for them. Gloria
Marcie
Posts: 2
Joined: Sat May 24, 2014 4:50 pm
Location: Tucson, Arizona

Re: New to the forum? post a quick introduction

Post by Marcie »

Hello, my name is Marcie and I live in Portland, Oregon, USA In 1989 I had a partial hysterectomy.
Soon after the operation I noticed that my legs were shaky upon standing. Over the years it has gotten worse. I have tried many different healing modalities. (acupuncture, chinese herbs, supplements, energy healing etc.) The only thing that has really helped is dance. If I take a two hour dance class I usually am able to stand better for about 24 hours. At the beginning of class my movement is difficult but does improve the more I move. I recently went to a neurologist that diagnosed me with OT. She suggested that I take 200mg of vitamin B2 twice a day and 300-600mg magnesium oxide twice a day. She said that it would take 3 - 6 months to see if this protocol would work. If this does not work she suggested propanolol or clonzepam. I have found that eating a very clean diet, no gluten, wheat or dairy has helped along with exercise. I am so happy to have found your forum. The description that you posted for OT describes what I feel perfectly. I am curious to know if anyone has found any other supplements that help with the tremors. I hope to take the medications as a last resort.
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 »

Hello Marcie: I'm happy the website is helpful and it was so nice of you post your story on the forum. Everyone's story is important !! We all learn and can identify with them and therefore in time find common points of interest. Your mentioning that dancing is helpful and I can see why because with dancing you are keeping your leg muscles moving and strengthen them, just as walking at a nice pace works them too. I'm a great believer in taking supplements, anything that supports the nervous system and other vitamins that I'm deficient in . Looking forward to more of you posts, Gloria
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 »

Peggy has posted information on the OT forum about an upcoming research/meeting with Dr Torres-Russotto at UNMC. Anyone interested should contact Peggy, whether you participated in the first round or not, or if you would like to only attend the meeting.

http://bit.ly/unmcResearch-2
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 »

and more news!

The NORD Research Grant Program has announced the availability of a 1-year grant of up to $30,000 for a clinical research study related to the diagnosis and/or treatment of Primary Orthostatic Tremor.

read more …. http://bit.ly/NORD_OT2014
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 »

My name is Nancy and I've been reading the OT forum for 3 years. That is when I realized that this mystery of leg tremors is being experienced by others. I live in the Kansas City area and took this information to my Dr. He then referred me to a neurologist who gave me an EMG and diagnosed OT. I was relieved to know that there was a name for this crazy thing happening to my legs which has been progressing for the past 10 years. He wanted to do an MRI and put me on medication but I refused. The diagnosis was all that I needed, knowing that there is no cure for OT.

Reading the forum encouraged me to live with what I have and accept it. I use all the devices as others to make life more convenient and comfortable (such as exercise, walking stick, stool on wheels, and an understanding husband and family).

I recently felt a need to register and share my experience with prism eyeglasses. I too have had good results and will continue posting on the discussion page "Eye related movement disorder".
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