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

Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: New to the forum? post a quick introduction

Post by Theresaann »

Sorry that you might have to join our "group". If you don't get OT as a diagnosis, get another opinion, and another.It could be that it isn't OT, but I'd get the other opinions if necessary. Many physicians haven't even heard of the condition. It's a miserable condition. Luckily, I don't have pain with it (three years into the diagnosis) and the tremors stop when I sit down. Heat is a definite adversary - makes my symptoms worse. Fatigue is another aggravating situation with OT. Weight gain is a bummer because I can't walk more that a few minutes without having to sit down. (And my history is climbing New England mountains, hiking for miles with my husband over Class 1-4 trails, and riding our bicycles for 35 or so miles each time.) I tried a cane at the onset of the diagnosis but found I couldn't balance. My neurologist suggested using a rollator - a walker with four wheels, a seat, hand brakes. My balance is much better. Personally, I don't give a care what others think about my using this. If asked, I use it as an opportunity to educate others about this RARE condition. So far, there is no actual, discernable cause, no positive treatment, and no cure. I find no relief from any medication. Medications are just experiments by neurologists. Many of them are for Parkinson's (which I thank God every day that it ISN'T Parkinson's or Multiple Sclerosis). But each patient is different in their response to meds. If you find one mentioned in OT sufferers discussions, look the med up on the internet. Meds in one country might not have the same name as in other countries. (Only you can decide if you want to risk the side effects listed.) Good luck in your search for answers and your fight with the symptoms.
Ernesto
Posts: 1
Joined: Fri Jan 03, 2020 3:51 pm

Re: New to the forum? post a quick introduction

Post by Ernesto »

My name is Ernesto...I currently live in Cincinnati.
I began developing symptoms about three years ago. I was finally diagnosed with OT January 3 by a physiologist.She listened to my symptoms and conducted a EMG. Strangely, she asked me if I had googled my symptoms...I told her that I had but OT was so rare that I disregarded the results.
I guess my next step is to see a neurologist..but as rare as this is...I don’t see a clear way to find a treatment. Anyway..if there are any recommendations..would appreciate.
JIMKRAYNIK
Posts: 2
Joined: Sat May 04, 2019 11:24 am

Re: New to the forum? post a quick introduction

Post by JIMKRAYNIK »

Hello I am Jim Kraynik age 71 and very active. Diagnosed with OT about 5-7 years ago. Now hinder with standing for short periods of time but not walking. Have to be careful with feet placement when in tight areas or trying to gain tight access.
Currently taking Clonazepam 0.5 3 times daily, Rytary 23.75/95mg 2 times a day and Gralise 1,800 mg once a day with dinner meal. Rytary has just been added a month or so ago and seems to help.
ATLMarsha
Posts: 1
Joined: Thu Jan 09, 2020 11:19 am

Re: New to the forum? post a quick introduction

Post by ATLMarsha »

I have been dealing with these symptoms for 15 years. I thought I was doing something wrong. I need to find a neurologist in Atlanta who understands my condition. I have been misdiagnosed with several Parkinsons and Essential Tremor. A friend helped me find this diagnosis based on her observations of me. This is all new to me. Im not sure if I feel better or worse knowing there’s a name for this and other people have it. I am 71 and very active. I appreciate any advice anybody can offer.
Soon Lye
Posts: 1
Joined: Sat Aug 29, 2020 3:36 am

Re: New to the forum? post a quick introduction

Post by Soon Lye »

Good Morning,
I am a new member ( from Melbourne , Australia ) and I am not sure which is the best 'section' to post - so excuse my ignorance. I am a volunteer researcher helping People with Disabilities ( PWD) and since Mar 2019 I have been working on a concept - a "Potential OT Reliever ( POTR) " to try to help OTers. It is now about 16 months since I started and I have now made a prototype " OT Reliever " which I would like to trial. So, I need a few OTer volunteers to test the system. The prerequisites are that the OTer :-
a) must reside in Melbourne , Australia - because the trial equipment and trial monitoring can only be done at my home
b) is able to stop taking any medication for a few days - to ensure any effects can be attributed to the POTR only .
Here is a YouTube link with some background of what has been done : https://www.youtube.com/watch?v=2WElu9W ... e=youtu.be. If anyone has any questions, feel free to ask on this forum or drop me an email at : OT101trial@yahoo.com. Thanks in advance. Soon Lye
Lake of the Woods
Posts: 263
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Researcher in Australia

Post by Lake of the Woods »

Hello,
I had the good fortunate to meet Soon Lye via zoom sessions this past summer. A lady from the U.S. contacted me to advise that he was doing research and wanted to get information about OT from people who have this.
I contacted Soon Lye and we set up zoom sessions with 5 other people with OT and I have to say it was very impressive what he is doing. He asked a lot of questions and gave us very professional presentations on what his work entails.
He has helped people with essential tremor and now has turned his attention to trying to help us.
Soon Lye is a very intelligent, caring man; he showed much patience dealing with our questions and if I lived in Australia, I would be the first OT person knocking on his door to sign up for these clinical trials.
Peggy
Canada
FairBelle
Posts: 1
Joined: Fri Sep 04, 2020 5:07 pm

Re: New to the forum? post a quick introduction

Post by FairBelle »

Hello everyone! Thank you for accepting me in your forum.

I'm from Ottawa, Ontario, Canada. I've been experiencing OT symptoms since November 2016 (at age 60). I can't say that I noticed the tremor at first, only a great discomfort when standing and an insurmountable desire to sit down by fear of falling or fainting. It's only in June 2017, while singing with my choir, that I noticed that my legs were shaking. I procrastinated until December 2017 to talk to my family physician about this, hoping that it would go away by itself, whatever THAT was. She knows nothing about OT but, to her credit, she quickly referred me to a neurologist specializing in movement disorders. I saw him in January 2018. He was pretty sure that it was OT at the outset and he confirmed the diagnostic in March 2018 after some tests conducted at the hospital by another movement disorder specialist to rule out PD and ALS.

It is a very disabling disease and I wish, like all of you, I did not have this. However, when I see how long it took for many people to get the correct diagnostic of OT, I consider myself fortunate to have had an answer so quickly. I also feel very fortunate not to have been given a wrong diagnostic along with some disabling medication as has been the case--and probably is still the case--for may OTers.

Take good care everyone and stay safe. Nobody needs COVID-19 on top of OT.
Jeannette
Canada
Whatnow
Posts: 1
Joined: Tue Sep 01, 2020 7:12 pm

Re: New to the forum? post a quick introduction

Post by Whatnow »

OT came on fairly quickly for me. One shaky leg occasionally to 6 mo later both shaky every time I stand. I am 67 and very nervous about the progression.i am very sensitive to drugs and am not sure that my doctor and I can find one that works with out awful side effects. To be honest this disease makes me feel stupid. Why can’t my brain control it. Thanks for giving me a chance to vent. I love my friends,but they can’t really understand how this is impacting me. I think it the I can walk, but I can’t stand thing.🥴
cisco38
Posts: 4
Joined: Sat May 23, 2015 6:43 pm
Location: Piedmont,CA. USA

Re: Re-introduction

Post by cisco38 »

Hello fellow OTers,

I have had OT for about 30 years, and was able to manage it with Fycompa 2 mg at night & Gabapentin 400 mg 3X a day. Unfortunately, in September 2018, I had a panic attack after I held a door open for a slow moving woman with a walker. Standing too long was the culprit. My neurologist who is well versed in OT, recommended seeing the psychiatrist on staff at the University of CA in San Francisco. It was excellent advice. She recommended CBT (cog-nitive behavioral therapy ) with mindfulness intervention. I still see the psychiatrist and the therapist periodically on Zoom. I am so much better mentally.
Physically the OT seems to be a bit progressive. Sometimes it is hard to tell if the fear of falling is due to anxiety or to the OT progression. I am currently in Physical therapy to problem solve the safest way to fall, to evaluate for any assistive equipment and to learn some strengthening exercises.

It has been quite a journey. I'd love to hear from you.

Stay safe, everyone.
Marianne M. Poppas
California
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