The Orthostatic Tremor Forum (archive)

Reply to Betty:
My neurologist diagnosed OT Plus because I also have essential tremors so I guess the ET is the plus. He stated on my first exam that he had seen thousands of patients with essential tremors but not one had tremors in the legs. At that point, he diagnosed the OT Plus. Seems I will be seeing my neurologist on a monthly basis for the present according to him, so I will find out how many OT patients he has seen. He has been practicing neurology since early 1990's and was referred to me by my neurosurgeon as the best neurologist around my area so I feel very blessed to be his patient.
Thanks,
Rhonda

Good morning Rhonda,

Thanks for the explanation of OT plus; I too have ET. I am not sure all who have ET also have OT, but I do think most who have OT also have ET ~ guess that is a bit confusing.

I feel most neurologist have never seen anyone with OT; and it is hard to diagnose. I saw eight neurologist over a period of about 14 years before I got a proper diagnosis. I hope you post the answer given you when you ask how many OT patients your neurologist has seen. At least he is interested in learning more about OT. He should learn a lot from you.

What part of Alabama are you loated? We have relatives in the Birmingham area as well as Anniston and Selma. If we are up that way, perhaps we could get together.

Good luck and keep us posted.

Betty

Hi Everyone!

My name is Liz. I live in Kingston, Ontario Canada and am in my mid-70's. I have not been officially diagnosed with OT but after listening to Erik White's documentary on the CBC, I talked with my family doctor. He has put me on a small dose of clonazepam and there has been a significant improvement in my functioning.

I have had problems with standing for at least 10 years and it has become worse in the last two years. Although my situation does not sound as bad some others, I have experienced freezing, difficulty in moving among crowds and going down steps without a railing. I have been taking yoga classes for several years and have had increasing difficulty with the standing poses. I attributed the shaking to tired muscles.

Two referrals to neurologists resulted in a diagnosis of age-related degeneration of the cerebellum and no treatment was prescribed.

I am really pleased to have learned about OT and believe that is what is wrong with me.

Liz:

How old were the neurologists?

Thanks goodness you have found this site. Slowly on OT is being better recognized, although old neurologists and many family physicians still have not heard of OT

The best to you.

Hi there,
I have just been diagnosed after ONLY 4 months of full body vibrating 24/7 and perhaps 6 months prior at a lower level. It seems this is a very quick diagnosis. I do not have problems standing still although I may have noticed a change in my leg strength. I was wondering if any others started this way.
They could only test it via needle EMG and I have no other clinical symptoms apart from insomnia for the same period, which I have never really had.
I am still shocked and half in denial about the diagnosis. I thought it was a menopause thing but no one I saw was familiar with the symptoms and it is not really visible to others.
I am so glad that this forum exists, thankyou to the organisers.

Hi! Liz :

Thanks for posting and although you are reporting the classic symptoms of OT, I'm sorry to hear that you are having difficulty finding a neurologist with knowledge and understanding of OT. Perhaps you should contact a large, well known medical institution with a neurological department for additional evalution and testing that may result in the diagnosis of OT that you feel you have. Here on the website we understand the trials you are going thru because many of us have had similar experiences so please keep us posted on how you are doing.

It is so terrific that people are learning about OT from Erik White's documentary. One person can make a big difference, thanks to all involved!

Gloria

Hi all of you,

I am a new member and my name is Petra.
I am 86 years old and probably the oldest of everybody. I am kind of lucky because I see so many
young people here who have OT or older people who have it for years,that must be very hard.

I live in New Jersey. First I want to thank Gloria for setting up this wonderful website so that we OT people can be in touch with each other.

One of my daughters found this website and I was so surprised because most of it was excactly what I had. I am for 95% sure thats what I have. I got it in the end of 2011. I moved here on Sept 15
2011 from Wyckoff to a retirement community in Hackettstown NJ
I have not been able to have it diagnosed. The first half year it was not bad at all. I thought it was anxiety from the move and from a very bad Phobia (if it is a phobia)which I got in Nov 2009 that ruined my life. I have now tremors in my feet,legs, stomach. chest and throat. I have to talk about that phobia later (on the forum?) because it might be related to OT. I use a walker ,I don't dare to walk by myself. I fold it and put it in the back of my car and go for a long walk in the woods if the weather permits. I have no trouble in the grocery store because I have a grocery cart to hold on to. I can stand too,it does not feel that great though. The kitchen is my enemy. I make a simple easy meal as fast as I can. I do have fresh vegetables every day. Well,that is it for now.

It was nice to be able to talk to you all. Petra

Hi Petra

So glad that we finally got your account up and running! let me know if you have any problems with the forum.

For reference as you investigate Orthostatic Tremor, you might be interested in this following report from Columbia University Medical Center, 2005. This report was compiled from previous patient records. Since this was a case study and not an actual research study, the patients were not all subjected to the same testing parameters, but a small portion of these subjects exhibited tremors that affected other areas of their body.

http://cmpl.columbia.edu/research/docs/ ... rofOT5.pdf

best regards,

Petra: So happy that you are now posting on the site and telling your experiences with OT and how you are coping. You mentioned that the kitchen is your enemy. I can understand how you feel because there was a time when I loved to cook and entertain but now the fun of it is gone because of the need to do most of the cooking sitting on a stool and that is so awkward and everything we need is never within reach!!!!! Nonetheless the longer we live with OT the more creative we become dealing with our limited mobility problems and here is the place we share these new skills. Thanks, Gloria

Hello admin and Gloria,

Thanks for your posts to me.

I am pretty slow and I have to get used to this site.It has a lot of information.

Thanks admin for the two articles. The first one I am familiar with and the second one was supposed to be about "Tinnitus"? (sp) However I think it was the wrong article but I do not have
tinnitus. As a matter of fact I hear pretty good for my age.
When it was my birthday,I got a free dinner here with other people whose birthdays were in the same month. I got placed with two deaf ladies. They did not have a hearing aid and they wanted to know all about me .All that shouting did not make a nice dinner.

Gloria, yes cooking is real hard. Luckely I have a small kitchen here and that makes it easier to reach for stuff.Still,I get tired so fast. I have to sit so now and then. Fatigue is a big problem.

I was always such an active person. Gardening was my biggest hobby. I got the first price for
"do it yourself" gardening and I did not even know that they were looking all over town.
Music (classical) was my life. I had to give my baby grand piano away. I gave Ruth, the Acupuncturist my piano. I still have 10 free acupunctures there, the trouble is that does nothing for me.What I do now is gather the most of Bach's cantates of you tubeand they sound pretty good on this computer
What I would like to ask is : How do I get information about myself on the right side of my post?
I don't know all that much about computers. Do I have to "log out" when I leave?
Log in every time I suppose?
Next time I have to go to the forum and tell you about my phobia and my great fear of falling.

So long,Petra.

Hi Petra

Do I have to "log out" when I leave?
Log in every time I suppose?

You don't need to log out when you leave if you are using your own personal computer. Although if you are using a public computer such as at a library, cafe, or community facility then it's a good practice to log out after your session.

How do I get information about myself on the right side of my post?

The information about your location on the right side of the post can be added to your profile, below is a link with some quick instructions, don't hesitate to ask if you have any questions.

How to include your location in your profile

Also, a little helpful tip. If you find a discussion in the forum that looks interesting, scroll to the bottom of the page. In the grey/blue bar at the bottom you will find the phrase "Subscribe topic", click on this and when there is a new post in this topic you will receive an email notification.

Also, when you post in a discussion, there is an "Options" area just below where you enter your post. Make sure the option " Notify me when a reply is posted" is checked and you will receive email notifications from that discussion.

Thanks Admin for all the information.
I still have not written on the forum but I will do it soon.
Petra.

Hello everyone. Just wanted to post a quick introduction. My name is Sue and I was recently diagnosed with ot. Like many of you my doctors had no idea of what was wrong with me. I finally did my own research and found some information and took it to my doctor which he then referred me to a neurologist. I am still able to walk unassisted but have trouble standing for more than 5-10 minutes. Like many of you, I take no medication. I hope that one day research will be able to help all of us. Thank you for sharing your stories, it helps to hear that I'm not alone.

Hi Mark,
I as everyone else on this site, have OT! I noticed you mentioned that you have in arms, and so do I
especially when I have to do something with my hands above my head, or if I have to do something with my arms being straight, but only if I'm standing. And trying to write if I'm standing, like signing
charge slip etc. Definatly can't do if I don't have a counter to lean on. And then it's not real legalable. Haaaa!! I have been taking Propapanol once in morning and it seems to really help my hands, not so much with legs tho. But hey, I'll take anything I can get at this stage. Sorry to hear you can't play your hockey anymore. Know what that's like, use to love golf, but can't stand still long enough to address the ball. Hope this helps you! ANGELA

Hi I have had OT for 9 years I believe that 3 tragic events in my life in 6 months caused this for me I lost my whole family I cannot stand for long without shaking writing has really shaky sit to shower & do anything really I had a bad relationship 2 years ago that made me worse with all the stress,I suffer panic attacks when shopping if have to stand in lines I tremble uncontrolable it is so stressful .
I take Neurontin & that was keeping it under control till the breakup I was playing golftill then now I cant play as I cant stand long enough my legs wont hold me up & my toes just dig in I have to lean or sit down housework is difficult hanging washing out can any body help me as I have been to so many neurologists they just tell you to get on the net or give you a pill.

would love to hear from anyone who feels the same I also had a fall & have been in a chair for 2 months just getting back on feet now
Cheers Cazzie