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

Marianne
Posts: 98
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by Marianne »

Good morning, Having been diagnosed with OT in 1996, and having had two knee replacements (last one in Oct 2017), I can tell you that OT can mess with many other parts of the body. Because most of us struggle when we stand up without walking our legs , backs, etc take the abuse. Our spines can become stenotic because of the strain we place on our spines when we are standing as well as our calves becoming stiff. Two yrs ago I had a spinal laminectomy and fusion to relive my back pain. And we all know how we curl our toes trying to grip the ground. Currently my standing time is seconds and I can only walk extremely short distances. Stools are placed in strategic places in my home so if I’m in my closet looking for an article of clothing and I can no longer stand the stool is there. Having total knee replacement did not improve my OT but it did relieve my knee pain. Yes my knee was quite stiff after surgery but 3 months of physical therapy fixed that. Wishing you well.
Nin
Posts: 36
Joined: Fri May 03, 2013 12:09 pm
Location: Milwaukee, Wisconsin

Re: New to the forum? post a quick introduction

Post by Nin »

Thanks Lynette for the reply. I'm currently trying the gel injections for the knee pain and am hopeful that if I get some relief, the achilles will have time to heal. At least that way I can tell which is causing the most problem - the knee or the achilles. This is a frustrating disability. I'm glad you've gotten some relief and hope it continues.!
McSweedy
Posts: 5
Joined: Mon Feb 19, 2018 10:19 pm

Re: Where’s my introduction?

Post by McSweedy »

Since I have written an introduction two times and saved the draft the second time I won’t write it again. Where is it saved? I was signed in, but for some reason, it knocked me off. This is too frustrating so maybe you don’t want another diagnosed Orthostatic tremors, from the Mayo Clinic on January 18, 2018. McSweedy is not happy.
McSweedy
Posts: 5
Joined: Mon Feb 19, 2018 10:19 pm

Re: I don’t think I was given the right diagnosis.

Post by McSweedy »

I was signed in both times when I wrote my introduction, but for some reason, it knocked me off. This is frustrating so maybe you don’t want another diagnosed Orthostatic tremors, from the Arizona Mayo Clinic on January 18, 2018. I really have an RX drug induced movement disorder that occurred 10 years ago. Every doctor I have seen says, “Gabapentin couldn’t have caused this, you must be Psychogenic.” My 5 mm x 6 mm mass on my hypothalamus gland at the entrance to my pituitary stalk doesn’t mean anything to doctors who have seen me, but an online doctor from India said my movements would persist with a hypothalamic lesion.
I do have slightly shaky legs, and balance issues, but twitching and jerking is something else.
McSweedy
Posts: 5
Joined: Mon Feb 19, 2018 10:19 pm

Re: New to the forum? post a quick introduction

Post by McSweedy »

Hi Gloria, I’m sorry you don’t have any standing time left. Thanks for starting this OT support group. OT is my diagnosis after my 10 year search. I was very confused about it since the consultant doctor only explained it in her written report. You have done a better job explaining it. My surface EMG testing was 12 -14 Hz, I guess it fits except for the fact that my shaky legs and standing time was really bad during the sudden onset of my movement disorder and I was almost an invalid. My husband took me to a Yamaha dealership and told me to pick out a Rhino ATV . Today I drove it to pick up branches but I have to stay close to it since my balance isn’t good. Is poor balance a common complaint?
sueesmith
Posts: 2
Joined: Wed Feb 28, 2018 2:52 am

Re: New to the forum? post a quick introduction

Post by sueesmith »

Hi! My name is Sue and I first started having OT symptoms when my daughter was in 2nd grade (she is now 30). I used to lector in and sing in the choir in church, but these activities were becoming impossible. I was also having signs and symptoms of Restless leg syndrome and was treated with klonopin, mirapex, sinamet and neurotin and while they helped my RLS, they did not do much with my standing problems.
I was then diagnosed with obstructive sleep apnea, which helped with the RLS and since the meds gave me more side effects (dry mouth, hangover sedation and the difficulty in going down stairs) than relief from the standing tremors, I stopped the pills. I adjusted my lifestyle- I teach and I either sat or roamed the classroom. I leaned against walls, I sat while people older than me stood. It was and is embarrassing, but with the RLS symptoms relieved with the CPAP machine, I dealt with it.
About a year ago, I started noticing a tremor in my right hand, but it wasn't at rest like in Parkinson's. Starting IV's got to be very difficult (I am also a nurse) and now it is getting hard to do bedside care. My husband and primary care provider sent me to see a specialist, Mara Seier, MD at the UNMC Movement Neurological Sciences.
It was so wonderful to know that what I thought was all in my head was validated as she asked me questions and went "check, check, check" with the symptoms I have been having for15 years. I had my EMG yesterday and although I have not gotten the results, from this forum, I have a better understanding of what is going on with me. They have me on klonopin in the am (I was taking it at night) and mirapex for the essential tremor of my hand. I am keeping a positive attitude and hope the sedation problems will go away with time.
I was also told about Dr. Torres Diego the international expert that is right at UNMC. I am also doing swimming exercises to help with my balance. I am keeping my fingers crossed! Thanks for listening!
sueesmith
Posts: 2
Joined: Wed Feb 28, 2018 2:52 am

Re: New to the forum? post a quick introduction

Post by sueesmith »

Well, with my EMG results I have my diagnosis-OT. As many of you have stated you were glad it wasn't "all in your head" and you have a name for it. I am taking Klonopin and Mirapex and finding some sedation problems, but some improvement in symptoms. Keep your fingers crossed!
RoseQ
Posts: 1
Joined: Fri Mar 09, 2018 4:26 am

Hello

Post by RoseQ »

Hello. I ve just been diagnosed through having an emg. I am so grateful to my GP who referred me to neurology, and then the brilliant neurologist who listened and made sense of my symptoms. I can't feel or see my tremor so was unaware that this was the issue. I'm also hyper mobile in most of my joints so had assumed that the issues were due to this. I would be interested to hear whether anyone else on here has hypermobility/ Ehlers Danlos type III. Well I have a lot to learn about OT so am really pleased to find this group. Looking forward to hearing how people manage and your experiences.
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 »

Rose: Welcome to the website and I hope it will help you understand life with OT . OT is progressive and wonder when you first started with your symptoms and how long were you able to stand still before you felt the need to start walking or sit down? The onset average is unlimited for walking but standing still generally starts with 15 minutes and becomes less in minutes the longer you have OT. Gloria
Jean Bowen
Posts: 1
Joined: Mon Mar 19, 2018 5:04 am

Re: New to the forum? post a quick introduction

Post by Jean Bowen »

Hello,I am a 76 year old mother of four and grandmother of 10! I suffered with OT for many years,being told I was suffering from anxiety and prescribed anti-depressants,I put up with this for quite a few years, but knew something else was going on. I changed to a different GP,who sent me to the Neuro clinic at our local hospital,she also was baffked, then had a 'eureka ' moment, and realised what itbwas! I had it confirmed at Addenbrokes hospital in July 2012,I had been suffering for 18 years, before this happened. I was put onto beta-blockers,which were useless,then read some of the literature availabke, about OT,(what little there was) and now take Clonazepam, other things have been tried,but no improvement, apart from Gabapentin, which have me extreme vertigo!! This is gradually subsiding! I am now permanently in a wheelchair!
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 »

Jean: Welcome to the forum and the life that you have experienced with OT and it's progressive nature. Because there is no medication to help us the only thing we can do is to find coping skills to ease the way through our lives and support research. Gloria
Julia_Too
Posts: 4
Joined: Tue Mar 20, 2018 6:50 pm

Re: New to the forum? post a quick introduction

Post by Julia_Too »

Hello, my name is “Julia.” I am 50 years old. I was diagnosed with OT about three weeks ago. I have been having symptoms since 2015.

I was diagnosed in Louisville, Ky., by a neurologist who specializes in movement disorders. He felt my legs shaking and made his diagnosis. I am also due for an EMG in a few weeks.

I'm taking 0.5 mg of clonazapam to help with the tremor. It’s hard for me to estimate my standing time. Sometimes it’s better than others. How does one estimate standing time? Is there a preferred way?

My neurologist did not discuss the progressive nature of OT. After reading more about the condition, I know that it is more than “an inconvenience.” It is a disabling condition.

I have so many questions. I’m hoping to connect with some people here. I wonder about how fast this disorder progresses.

Many have said to get a wheelchair at an airport. I have a trip soon. I am in my early stages of OT. Should I get a wheelchair? I’m going to an event at which there will be a lot of standing; I’m looking for the right portable chair.

I wish effective surgical options were available at earlier stages during the progress of the disorder. The drugs aren’t exactly a fit, although they may help control symptoms for a while. I dread being dependent on clonazapam or having to increase my dose.

My arms are affected as well; I have shakes when presenting someone with a piece of paper, for example. Sometimes I can’t eat soup with a spoon.

I’d like any advice on how and when to tell my employer about my condition.

Any encouragement is welcome. I need to know I can “do” this. Thank you in advance.

Julia
lindamo
Posts: 2
Joined: Tue Mar 11, 2014 1:48 am
Location: Tucson (SaddleBrooke) Arizona, USA

Re: New to the forum? post a quick introduction

Post by lindamo »

Hello Julia,
YOU CAN DO THIS!
My name is Linda Morrison from Tucson, AZ, I was diagnosed in 2012, I have tried clonazapam too. I had problems with that drug primarily the loss of hair and the drug not helping at all. Switched to Gabapentin and it has helped somewhat. There is nothing I know of that will completely stop the tremors.
Take the wheel chair, your travel experience will be a whole lot better. You are wheeled through the airport, usually put through security in a VERY short line, allowed on the plane first, at landing a wheel chair will be waiting especially needed if you are changing planes (sometimes you are taken to other gates via the employee route.) As far as the event you will be attending, I have used a "sport seating folding seat/walking stick" sometimes called a golf chair, it folds up so you can use it as a cane and when shaking comes on and you need to sit unfolds quickly . Google, golf chair or sport seating folding seat, Dick's Sporting goods for 24.99, or any golf store.
The progression is different for all of us, mine seems to be moving slowly. I use a cane when in crowds , shopping anywhere there be a lot of people moving in different directions. If I do have to stand in one place I often sway back in forth, walk in place.
As far at your employer goes, you really do not have to tell he/she anything, but if you want to just tell him what it is and that you won't be able to stand in one place for any period of time.
If you are FaceBook go to the Orthostatic Tremors page and join the group and you will be in contact to a whole lot of people.
Welcome to the group
Shakey Linda Morrison
Julia_Too
Posts: 4
Joined: Tue Mar 20, 2018 6:50 pm

Re: New to the forum? post a quick introduction

Post by Julia_Too »

Linda,

Thank you for that warm welcome and the words of encouragement. Much appreciated and needed.

I am starting to become self-conscious about my tremors, which is one reason I may want to tell my employer (besides ensuring protections under the ADA, should they be needed as time progresses).

I’ll look into getting a wheelchair at the airport. I’ve ordered a folding “sports” chair with a triangular fabric seat. It folds up and has a carry strap. It’s not a cane though.

Like you, I find myself swaying or shifting my feet a lot if I have to stand too long. I wonder how I’ll know that I should start bringing a cane-chair with me to places. (I have a lot of questions about the practicality of those, especially for shopping.)

I will find the OT group on Facebook. It sounds good. Thanks for telling me about it.

Julia
Marianne
Posts: 98
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by Marianne »

Hello and welcome, I was diagnosed with OT in 1996. In the beginning shifting was a mechanism I used in order to extend my stand time. The progression of OT is different for all of us. I have good days and bad days and take 8mg of Clonzepam daily. Several years ago when I realized I could not do supermarket or mall shopping I started using the electric scooters in the stores that had them. I then decided to get an electric scooter which is always in our SUV. I do not use any aids at home - I have stools strategically placed in case I need to sit - like when I’m in my closet trying to chose what to wear. For me my stand time has gone down to 30 seconds. Walking is a challenge as well.

I wish you well in all of your challenges

Marianne
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