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

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 »

byngO : Thank-you for a great summary of life before and the onset of OT. I'm thankful you are in the hands of a neurologist informed about this ban in our lives. I wouldn't be surprised it he gets additional OT patients in the future because we have quite a large number of OT people from Canada registered on the website. Keep us posted and ask questions too. Gloria
Cosettethecat
Posts: 1
Joined: Thu Sep 29, 2016 6:03 pm

Re: Newto the forum? post a quick introduction

Post by Cosettethecat »

Hi, my name is Pat and I live in Ada, Michigan. I first experienced OT symptoms in 2010 at 67 years old. Once referred to a Neurologist, I was diagnosed with OT and given Clonazapam. My tremors gradually became worse and so did my memory! I got by as long as I could lean on things to steady my balance and shaky legs. I would also touch the wall to try to steady myself if someone stopped me in the hallway to chat since I was still working in an office. After four years of this, symptoms were getting worse and I was sent to a second Neurologist specializing in movement disorders but mostly Parkinson's patients. I went through a battery of tests, Brain MRI, also an MRI checking chemicals in brain, Spinal upper & lower back, Emg. I even tried simenet thinking if Parkinson's, this would help. Finally diagnosed with OT again. I now must use a cane when walking to help with balance when I stop walking and must use a walker when I attempt to shop. I now am grateful for these tools as they help me to continue to function. I have not met anyone with this problem until this forum. It is wonderful to read others stories. I have decided not to take anymore medication for OT because I feel mentally better without it. I have prayed for healing but have changed my prayer to acceptance and have been happier ever since. However, this OT has changed my life. I have sold my condo and my son has built a suite adjacent to his home for me. I struggle with groceries no longer since he is there to help.I use a stool on wheels (like you see in the doctors office) to operate in the kitchen, it's great! I walk with not problem, just can't stand still for more than a minute. Worse when nervousness kicks in. I take a light anxiety med when I go out socially, but still struggle. I drag a stool around the house to sort laundry, put make up on, etc. I also use a stool in shower. My friends have come to understand my problem and I am grateful for their kindness but there are so many situations that come up, such as a buffet or coffee after church that are too difficult to deal with.I realize that a good attitude is my strongest defense against this debilitating condition and I am constantly working on it.
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: Pat, be proud of yourself, you are learning to cope with your life with OT and it is not an easy thing to do but most OT friends must do the same . Memory is a problem and I personally feel the same but it is something we learn to live with because for most of us giving up meds make our legs feel much harder to deal with. Time helps us to develop our personal OT lives. Look forward to your future postings , Gloria
Karkelly
Posts: 4
Joined: Fri Oct 21, 2016 1:59 pm

Re: New to the forum? post a quick introduction

Post by Karkelly »

Hi, my name is Karen and I'm from Las Vegas, Nevada. I was diagnosed with OT the other day and now the doctor has me going for tests. Was wondering how can a diagnosis be made so quick before the tests? Are these shaking legs exclusive to OT? And no medication until the tests, are there helpful medications to prevent the tremors?
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! Karen: You are very lucky to have found a doctor who recoginized the symptoms of OT and is sending you for testing to verify OT before giving you meds. That is the normal procedure before giving medication. Finding a doctor who is familiar with OT can be difficult generally. Most of the medications that we have will help quiet the tremors but there are none on the market to prevent them completely. Please let us know how your tests were and the starting meds you are given. Here on the website you will find many OT friends who have learned and share coping skills with OT to help get us thru the normal day. Look forward to your postings, Gloria
Karkelly
Posts: 4
Joined: Fri Oct 21, 2016 1:59 pm

Re: New to the forum? post a quick introduction

Post by Karkelly »

Thank you for your quick response. I will certainly post my test results and will have many questions for the group!
Frankie
Posts: 11
Joined: Wed Oct 19, 2016 1:31 pm
Location: Cross Plains, Tn
Contact:

Re: New to the forum? post a quick introduction

Post by Frankie »

I'm 69 yrs. old. I don't know, until I go back to my doctor, to see if OT is connected to restless leg syndrome? I've been plaiged with restless leg since I was in my late 30's. I know when my legs started to shake back in May, I had know idea what was going on. It was nice to go to my neurologist & come out with a name for my crazy shaking.
I'm glad to find this site & know that there are others to converse with & get some insight into what lies ahead. I look forward to meeting new friends on here, that understands what I am going through.

Frankie
Nancy Linthicum
Posts: 9
Joined: Sat Nov 05, 2016 11:00 am
Location: Green Valley AZ

Re: New to the forum? post a quick introduction

Post by Nancy Linthicum »

Hello, I am a new member to your discussion group and I'm anticipating getting to know other OT people. I was finally diagnosed early this year by a neurologist after a confirming EMG. I must say I was relieved my inability to stand around and talk with friends, or to be a good attentive tour group member had a real identifiable reason other than declining attention or physical weakness. My dismay was always than I would appear to speakers and other listeners to be uninterested in the subject and display an unfriendliness toward them. When I have finally understood that there are others like me who suffer so similarly my conflicts and doubts I have found some hope in being able to adapt as my condition presents itself in my daily life. I will begin by thanking you Gloria for initiating this website.

A recent mention on the web that September was "Orthostatic Awareness Month" encouraged me to contact my local newspaper, The Green Valley News, and present some facts to the editor about this condition. He was interested and asked me for a personal article describing my condition. This was published and resulted in several people with similar symptoms to respond to my suggestion of getting together to share our adaptations and attempts made to "cure" our condition. This support group is in initial stages. The additional benefit to the article is that several of my friends and acquaintances have mentioned they read the article and I no longer feel the need to try to explain why I must always say, "Let's sit down" or why I use a cane in such odd circumstances - not necessarily when I walk in or by them, but immediately when I stop to chat. My self-consciousness has diminished and some tension relieved. This a a part of my story. I'm anxious to read yours.
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: New to the forum? post a quick introduction

Post by admin »

Hi Nancy

What a terrific introduction to the website. And wonderful that you had an article published… and the possibility of getting together with other people with similar symptoms. Possibly there are people here on the forum that live close enough to participate. If your article is in a format that you could post here on the forum I’m sure that others would be interested too.

I also want to thank Nancy for being patient with me and for being persistent and re-registering, I mistakingly deleted her original registration.... Oops!

welcome and wishing you 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 »

Nancy: What a great presentation of the beginning stages of your OT with the social avenues that you were participating in and the way that you learned to work around it and found ways to present recognition of OT as a result.
Those who have OT are very sensative to the way they are perceived in public and I believe in your ideas of presentation of more information about OT is greatly needed . Thanks for a great posting and look forward to more of your story....... Gloria
andrew.gko
Posts: 1
Joined: Sun Nov 13, 2016 7:18 am

Re: New to the forum? post a quick introduction

Post by andrew.gko »

hi to everyone from Greece. My name is Andrew and I am 40 years old.

I have read all , forum ,topics and I have to admit that you are very special and exceptional people.

Four years ago I noticed that when I was picking up heavy objects my arms was starting to have tremors. A year ago , one morning I woke up and suddenly I started feeling tremors at my right leg while I was standing upright. These tremors was disappearing while I was sitting or lying down. The first month I was afraid to stand upright because I was feeling dizzy and unstable. Then I got used of this situation. I went to 2 neurologist for a diagnose and they both diagnosed my situation as ET. I asked them if they think that is OT but they said no!!!!

The past three days , while I was at home I use a timer to see for how long I can stand upright without problem. i manage to stand upright for more than ten minutes and then I stopped. But when I am at work (external salesman) I can't stand upright for more than 2 minutes (during work I am very anxious)

Did anyone of you has the same symptoms? Tremor only in one leg?

I am confused.
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Re: New to the forum? post a quick introduction

Post by renaely »

andrew.gko wrote:hi to everyone from Greece. My name is Andrew and I am 40 years old.

I have read all , forum ,topics and I have to admit that you are very special and exceptional people.

Four years ago I noticed that when I was picking up heavy objects my arms was starting to have tremors. A year ago , one morning I woke up and suddenly I started feeling tremors at my right leg while I was standing upright. These tremors was disappearing while I was sitting or lying down. The first month I was afraid to stand upright because I was feeling dizzy and unstable. Then I got used of this situation. I went to 2 neurologist for a diagnose and they both diagnosed my situation as ET. I asked them if they think that is OT but they said no!!!!

The past three days , while I was at home I use a timer to see for how long I can stand upright without problem. i manage to stand upright for more than ten minutes and then I stopped. But when I am at work (external salesman) I can't stand upright for more than 2 minutes (during work I am very anxious)

Did anyone of you has the same symptoms? Tremor only in one leg?

I am confused.

HI Andrew. I believe my doctor told me essential tremor is generally only found from the trunk upward--not the legs. They have a test to check the intensity of the tremor. Also, I'm pretty sure it's not unusual for your tremor to dominate one side of your body when it starts (usually the dominant side), but it progresses--rapidly sometimes. My tremor on my right side is significantly worse than my left AND I've got ET in my neck, so I looked like an unsteady bobblehead with palsy in my right side when I was at my worst. You might want to get a 3rd opinion and look for a neurologist who specializes in movement disorders. I started out as a straight up ET diagnosis, only when I went to a specialist, did I find out what it was, and nearly 6 months after that diagnosis, I was nearly house bound--6 months after that I had DBS implants. If you have a vitamin store, you might try Valerian Root. It actually relieved my tremor in the early stages and reduces anxiety well. Good luck! Keep your chin up, it's a long ride.

Rena
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! Andrew from Greece welcome: Perhaps you have two disorders going on ET in your arms and OT in your leg. The fact that your leg would tremor when standing but disapeared when sitting or lying down is a classic symptom of OT. Perhaps when you are standing at work your standing time is less because you are in a more demanding situation. To get a more clarifying diagnosis look for a large medical hospital with a neurological movement disorder department and hopefully they will give you a EMG to determine if you have OT. Hope this helps and keep us posted, Gloria
Joyebelle
Posts: 4
Joined: Fri Nov 25, 2016 8:06 pm

Re: New to the forum? post a quick introduction

Post by Joyebelle »

Hi Everyone!
I have just been diagnosed with OT after years of symptoms. I have always blamed myself as being unfit.... need to work out more, walk more, stop being lazy. I have been avoiding shops for years now for fear of having to stand. I suffer depression/anxiety and know that the more depressed or anxious I am, the worse the Tremor becomes. I have spent seven weeks in hospital so far this year changing anti depressants, believing the Tremor was a side effect. I am quite relieved to have a diagnosis from a visiting neurologist as it explains so many things to me!
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 »

Joybelle: Now that you have the correct diagnosis in you life you will be able to find coping skills that will help you get thru life with OT. Also you now have many OT friends here on the website that fully understand how you feel and you can ask questions of them to help you cope with these symptoms that have been in your life without a name. Welcome aboard, Gloria
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