The Orthostatic Tremor Forum (archive)

Entered before I finished my last post. Has anyone ever heard of this author or know anything about her?

Hi. I have been an OT sufferer for about five years but have only been diagnosed for six weeks. I have been treated for ET by my neurologist. He was very excited when his stethoscope heard the 'helicopter rotor' and called his senior to listen. It was, 'Wow!' and 'Well, just listen to that!'
I thought, 'You don`t have to sound so pleased!'
I`m 71 and now use a wheelchair all the time as my mobility is seriously compromised. I take a high dose of both Primidone and Clonazapam.
I have developed a very unpleasant all-over skin itching bad enough to keep me awake at night. I wonder if this is a side effect of the medication.
I`ve ordered the book mentioned on this forum and look forward to reading it. I`m pleased to find that, 'It isn`t just me.'

I`m pleased to find that, 'It isn`t just me.'

Hi Derek,

"'You don`t have to sound so pleased!'"

welcome to the forum!

Hello Derek: Happy to have you as a new member of our OT Community and that you found a doctor who thought he discovered a "prize" when in fact we have been around for quite some time ! I'm thankful we are finally and slowly being recognized earlier than was the case before the beginning of the site. Perhaps you should check out the very " unpleasant all-over skin itching" with one of your doctors. If it is a side effect you should get off the med as soon as possible. You will find the website quite a study in itself thanks to all the postings by our members. We have grown to be a strong community with a rather comprehensive accounting of how life really is with OT right here on the forum. Enjoy being with your new friends, Gloria

Graham started a discussion on the OT book - Am I The Only One

Link to discussion

Hi All,

NORD, the National Organization for Rare Diseases has sent along a message of thanks for this Thanksgiving Day in the USA.

A link to the message from NORD: http://bit.ly/1giqNyL

Even though our friends in other countries might not celebrate Thanksgiving tomorrow, the sentiment is the same. And, I would like to thank all of our OT community for being here to help others, to encourage and mostly for just being friends.

Gloria
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Begin forwarded message:

From: "Peter Saltonstall, President and CEO"

Gloria,

NORD is truly thankful for supporters like you. You are generous. You are active. You are strong. And you inspire us every day. This holiday season, we wanted to take a moment to thank you for everything YOU have made possible this year!

Warmest Regards,

Peter L. Saltonstall

P.S. We wish a safe and happy Thanksgiving to you and your loved ones!

That was indeed a lovely message from NORD - I certainly have been happy with any contacts with NORD that I have had a relationship with.

You definitely get the message that they care about us and are trying to help.

I hope everyone supports this cause!

Peggy

Hi, Everyone,

I am new to the forum, and pretty new to the diagnosis. My MD did all the standard tests and I think it was the EMG that made her conclude I had OT. Also process of elimination, I think!

I still don't feel 100% confident in my diagnosis. Still trying to understand it all. I am wobbly, to be sure, but there is also a lot of stiffness, weakness/pain, and it's not limited to my legs at all. Also some cognitive issues at work. I'm hoping the latter are simply from being stressed out over the increasing physical issues and lack of diagnosis. I had visions of living on a park bench when I became unable to walk or work since the MD's kept telling me I was fine.

It took about 3 years to get a diagnosis, and then it was by accident. I'd given up, then ended up in the ER for Bell's Palsy.The Bell's Palsy was annoying at best, but the neurologist noticed the way I moved and wanted to follow up with me and run tests. She was able to figure this out.

So I'm hopeful. Still confused, but hopeful. Nice to know there are others out there!

Snowgirl: Welcome, I'm sorry you still have confusion over your diagnosis. OT is very difficult to understand and it takes time. However it might be helpful for you to get another opinion to ease your confusion. You live in NYC and there are numerous large medical hospitals that have Neurological Movement Disorder Centers where you could ask for a referral to a neurologist familiar with OT. However the fact that the doctor who diagnosed you with OT knew the results of the EMG confirmed her thoughts.

I wish you luck in solving your uneasy feelings, we are here to help as well.

Please keep us posted , Gloria

Hi, Gloria,

Thanks for your reply. I am considering a second opinion. Armed with a diagnosis may make it more productive than my last round of MD's 3 years ago.

Would you know where I can find reliable info on OT? I am curious about the non-leg related symptoms - that's why I joined to hear the thoughts of others facing this.

The only other option the MD is considering is extrapyramidal side effects from taking zyrtec for so many years. It apparently can deplete dopamine and cause similar problems. Trying different meds should help clarify this.

I look forward to reading and learning here from everyone! It is good not to feel so alone with this. It's hard to have something that no one has ever heard of. . . . .

What is the 'helicoptor rotor'? I've not had a neurologist listen fir this. Also does anyone get a vibrating sensation in their legs? I've had thus a few times but not sure if it's linked with OT or not.

shep19uk: 'helicoptor rotor' is the sound of a helicopter that can be heard in hardening leg muscles with a stethoscope when we stand. This plus an EMG is generally used as part of the diagnosing of OT by most neurologist. The vibrating sensation you feel might be of the same scenario of the " shaking leg" we get when we " over stand "...... all part of living with this strange OT! By the way how did your neurologist test you for OT? Gloria

Hi Shep19UK

Below is a reposting of a video and further information on the helicopter sound -

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A very interesting video has been posted on the Neurology.org website. This video and accompanying text by Vincent S. DeOrchis, MD, MS, Howard L. Geyer, MD, PhD and Steven Herskovitz, MD is very good, and combines an EMG chart with the audio of the "helicopter" sound. As a result they have created a terrific illustration of something that is often undetected as a tremor:

link to Neurology.org article

Orthostatic tremor is rare, and the characteristic high frequency can make it difficult to visualize or palpate; diagnosis often depends on tremor analysis.1 A unique feature is the sound resembling a distant helicopter during auscultation over the thigh or calf.2 This “helicopter sign” can also apply to the sound generated during surface EMG of affected muscles.

What is especially nice about this video is that it contains audio of the "helicopter" sound, the graph of the EMG and the live video of standing legs with the surface EMG sensors applied:

Link to video on Neurology.org website
(if you experience problems viewing the video read below about viewing on a Mac)



The video format can be easily viewed on a Windows computer, but you may have difficulty on a Mac because of the format that was used. If you do have a Mac and would like to see this video you can try Flip4Mac.. sorry I can't give you any tech support on this one. The free version should work. http://www.telestream.net/flip4mac/

If you have an iPhone or iPad and feel adventuresome, you can download a free app from iTunes called OPlayer Lite , after you install and open OPlayer, choose "File" from the bottom menu, then choose "Web Browser", type in orthostatictremor.org and click on done. This will bring you to the home page of the OT website. Click on the link in the news area about this video post. Then scroll to the link and click on "Link to video on Neurology.org website". It should play with video and sound.

Or, what might be the easiest way, you can head over to the library and watch it there.... but find a quiet area so that you can hear the video. Do libraries turn off the speakers/audio on their computers?

OT friends -

I've started a topic in the "things that help" forum, for anyone that might have a rollator, a wheelchair or other device that is no longer needed, and you would like to gift it to someone that could use it. And, I posted information about a rollator that I no longer need and would like to give away.

http://www.orthostatictremor.org/phpBB3 ... 3865#p3865

Gloria

Hi Gloria, sorry for the delay. I was diagnosed with OT by a neorologist who watched me stand and walk. There were no other symptoms so that's what he said it was. I will see him again in March so may ask for the other tests talked about in the website. Thanks for the post about the helicopter rotor also. Thanks Sarah.