The Orthostatic Tremor Forum (archive)

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Good point Dave; if the EMG is done while lying down or even sitting, the results won't be accurate. One MUST be standing for the tremors to be seen and recorded.

Of course, I did have some tremors while seated, but not like I have while standing.

Betty

Hi! All:
That is correct, standing having an EMG in diagnosing is important because OT is a weight bearing entity and the Hz results show between (13-18 Hz) * one of our distinguishing factors from ET tremors (4-7 Hz) or Parkinson’s (3-6 Hz) . This helps in a proper diagnosis.

* Hz / oscillations or tremors per second.

Your OT partner, Gloria

Betty, because my OT and ET have been established, my EMG is for peripheral neuropahty in both arms and legs from the elbows/knees down. The office called today and they said with meds as what they are measuring will not be effected. Joye

Hi Joye,

Thanks for the info....since you already know you have OT and ET; you are being tested for something else and your doctor WANTS you to be on your meds. Of course, always follow your doctors' orders.

Good luck, and we will eagerly await your results.

Betty

I had EMG testing on my legs, arms and hands. They used a combination of shocks and some nasty needle in the fleshy parts of my hands that drew blood. As I already have a dx of ET and POT, this was for peripheral neuropathy. The neurologist found a third dx for me of bilateral neuropathy effecting my little and next finger on both hands caused from a place around my elbows not sending nerves signal. He is recommending surgery. He says none of the three ailments are related and each has a different treatment. After the testing he handed me an alcohol wipe to take off the marks on my skin and the blood. Thsi is very discouraging. Joye

Joye,

I am sorry you did not have an easy day. I can see how discouraging it would be. I am very curious what your symptoms of the neuropathy are? Do you feel like none of these conditions are related also? I am curious what surgery would do? Hang in there. It does take awhile to get it all sorted out.

Kate

Hello Joye,

I must agree with Kate; I am so very sorry you had such a difficult day; and I can understand how discouraging it would be.

As I think I mentioned, I did have a nerve conduction study done many years ago ~ before I knew I have OT ~ but the needle wasn't large and it didn't bring blood.

I think before I considered ANY surgery, I would most certainly get a second or even third opinion.
Many people have neuropathy, but I haven't heard of anyone having surgery. My husband has it in his legs; no suggesion for surgery.

I do hope you are feeling better....and it does take time to get things sorted out when you have multiple things going on. I am a good example of that.

Try to stay positive, for 'this too shall pass'!

Betty

There is a nerve that runs down your arm and by your elbow that controls sensation to the outside of each hand, the little finger and the edge and tip of the rings fingers in both hands. Just since Feb. I've had numbness and tingling and the feeling I was wearing long glove with tight bands. I also have this in my legs but as I have a fresh break on my left leg and ankle with 13 screws and two metal plates, the doctor could not test them. I was laying down and had my eyes closed. I did not see the needles but had blood running in the fleshy mounds on either side of the base of both palms and several black marker marks up and down my arms. He took several measurements with a tape measure and did several calculations. He asked if I had an orthopedic surgeon. I said no but then he pointed to the long fresh scar on my leg. He said that the nerve damage is at my elbows and they could rerout the nerve to the top of the arm. I agree...it does not sound like something I'd want to mess with. I asked him why I have three conditions, he said the causes are not fully understood but they were unrelated. The daily raising of the dose of Kloponin is now getting to me. He said any adrenillin makes the POT especially worse and figuring out the right dosage to calm the tremors without bringing on depression was tricky but he felt was the best course as he said all other treatments tested with less than 7% response as opposed to well over 35% with Kloponin. I'm on Inderal for essential tremors. I asked about progression and he said that since I had POT since 1986 and it took this long to bring on falls, that with meds, he felt I could slow progression very appreciably. He also said that well-developed coping skills were the best tools to stay confident and not get rattled in situations thereby raising the body's production of adrenillin. But then he told me in over 30 years of practice, I was only the 5th case of POT he had diagnosed. Joye

Joye: You asked your doctor a lot of good questions and he gave you excellent answers. Maybe he has had only 5 patients with POT but he understands it very well. I would have a lot of confidence in him. Hope things go well , Gloria

Joye, after reading your very informative post; I must agree with Gloria. I think you have asked a lot of questions and your doctor did give you excellent answers. He does seem to be very aware of the problems regarding POT, as well as your other problems.

At this point, I too, would have confidence in him, and hope things go well with whatever you decide to do.

Good luck and keep us informed.

Betty

Glad to have found this board and this doctor. he did say he has many Parkenson and MS patients and many of them belong to support boards. He said to be careful as those who are happy with their managment rarely participate, so boards often offer a skewed view of the illness mostly toward the pessimistic side. I told him about the travel tags here and he wanted to see one and felt that was a great idea he had not seen before. As I had a concussion at 6 and have an ANA of 1:180, I probed him about any connections. He said neither is tied. With neuological stuff, he said it could be in you brain, spine or any number of reasons. My MRIs of my brain, neck and spine were normal. I did look up the procedure of moving the Urnal nerve and it looks like something I'd avoid if at all possible. Thanks for being here. Joye

Joye,

The more I read of what you post, the more I feel you probably have found a wonderful doctor, who has your best interest at heart.

I feel you will find most people on this site will write what is happening to them; both good and bad, and usually it is to try to find out if anyone else is/has experienced any of the things they are.

Since so little is known about POT; we all seem to be looking for some common thread, and I don't think those who write are pessimistic; we all try to be as positive as possible and as helpful as possible.

My goodness, as I continue to read about your life; you have had more than your share of incidents. I do hope things begin to turn around for you soon. We all know...as for the POT....it is a trial and error situation.

Continue to keep positive thoughts and do as we all do, continue to try to find different ways of coping.

Betty

Hi Mark,
I started acupuncture last week. The Dr. told me that she did not know if it would help with OT, but it would help with anxiety, which seems to make mine worse. So I will let you know if I feel it is helping. She also is a MD. so it is paid for by my BCBS. You might want to see if you can find someone in your area who is also a MD and acupuncturist. Just a side note to any of you out there, My mom just reminded me of a time when I was 17 and was in a wedding and my legs where shaking so bad you could see my dress moving. I am 60 now and only in the past 5 years have I really noticed my tremors in legs and hands getting much worse. So it must be a slow progressing decease, that is kinda encouraging!!!!! Hope this helps,

Angel

Hello Folks. My name is Adrian. I live on the west coast of Ireland. I think I have been suffering from OT for the last ten years. Only diagnosed four weeks ago. I have been taking gabapentin and since increasing to six per day my head has started spinning so I will have to get back to my doctor. The web site is a great idea and it's a relief to know I'm not the only one with this complaint.
Best wishes for now Adrian \It is now Easter,as you all know. I am still having tests to find out about my vertigo...the last was a lumber puncture, still waiting results...get this sorted and can get back to sorting out my ot. Vertigo does seem to complicate things, when you find it hard to stand still. Keep positive, Adrian