Missed Diagnosis?

[Jane Elise]

Greetings all -- This is my first time in writing and I hope I can get some help. I recently met a woman with OT who has exactly the same symptoms as I, so I googled "Orthostatic Tremor" and found your website. I have been reading the forum for quite a while and am amazed at how similar my experiences are. However, a neurologist I saw three years ago said he had ruled out OT. A coincidence is the fact that before I had ever heard of OT, I was put on clonazapam for essential tremor and on two different occasions mentioned to the neurologist that it seemed as if the clonazapam helped my standing just a little. With the similarity of symtoms and the small relief from a common OT medicine, I am beginning to wonder if I had a false negative result from the OT test. Has this happened to any of you? If so, I will certainly seek another OT test. Am looking forward to hearing from some of you!

[stella R]

Hi Jane,
Welcome to our website and our group of O.t. friends.
I found i had to see 3 neurogolists before i found one who was familiar with my problem.
Actually it really is a Dr. who is a specialist in MOVEMENT DISORDERS.
i HAD AN ENG TEST DONE and that is how he made his diagnosas.

Glad to hear from you and keep in touch
stella

[Jane Elise]

Hello Stella -- Thank you for your quick response! I neglected to specify in my first note that I did indeed have an ENG (or, as I understood my neurologist to call it, an EMG) and this was the test that did not show an orthostatic tremor. So what I meant to ask was whether anyone had ever had a negative result on this ENG/EMG the first time and then later showed a positive result. The doctor ruled out Parkinson's and something called "stiff person syndrome," also. She seemed to feel that an MRI would be the next step but I cannot have that test because I have a pacemaker. I just can't get over how similar my symptoms are to those of you diagnosed with OT

[gloria]

Dear Jane: Getting a proper diagnosis is a common problem that many OT people have in their history. The problem is trying to find a neurologist who knows the symptoms of OT. I would suggest that perhaps you get a third opinion from a neurologist who is from a Neurological Movement Disorder Center. If you know that you have the same symptoms as those described on the Home Page of the website then you probably do have OT but should be tested again with an EMG that will confirm it. This would help too, would you please go to the page where you registered and include your location. This way someone may live near you who may know of a neurologist in your area. Keep us posted, Gloria

[stella R]

Hi JANE,
Sorry i meant EMG test.
TYPING ERROR.
Take care
stella

[Jane Elise]

Well, I can't seem to find where I enter my location -- computer literacy is not my strong point -- but I live in Prairie Village, Kansas. Yesterday I saw the "Profile" tab but today I can't seem to find it!