The Orthostatic Tremor Forum (archive)

I'm not sure whether I belong here or not. The OT diagnosis has been suggested to me but no testing has been done.

I have a diagnosis of ataxia (there is supporting MRI evidence of cerebellum degeneration) but tests for known SCA disorders was negative so now I am once again in search of answers.

I have had an essential tremor of both hands - primarily left - for several years and that is gradually worsening. The jelly leg tremors began a few months ago. This is more of an internal tremor - one that I can feel but no one can see.
I feel like I have no bones in my legs. It is worse in the morning and improves throughout the day. I have never related it to standing. I am usually moving about and sit down when I get too shaky. My standing activities tend to be at the end of the day - when I usually feel my best.

The ataxia produces both gait and balance problems so there is no way to know whether this is connected to that issue or a separate entity.

Does anyone have anything like what I describe here?

I have read that balance problems have been connected (as a cause) of OT. Maybe that's it. Also that OT is an extension of essential tremor.

Right now I have symptoms of Celiac Disease but don't have it, symptoms of MS but don't have it, symptoms of Spinocerebellar ataxia but don't have! Suppose I have OT?

I really am not looking for a disease to have. I am looking for a diagnosis I have been looking for that for a long time.

I will be watching this forum. camm

Camm: Welcome to the forum and I see you are experiencing some frustration in trying to find a proper diagnosis for your multiple symptoms. As far as OT is concerned, it is a movement disorder therefore I suggest that you go to a Neurological Movement Disorder Center and find a specialist that can help test,separate & diagnosis your problems.

Best of Luck, Gloria

Thanks for your response.

I just completed testing for SCA at NIH(Movement Disorder Clinic) in late October - before the jelly legs symptoms really showed up. The results of SCA testing were negative. In a recent phone discussion re those results I brought up this tremor issue. OT was suggested as a possibility and it was suggested that I take it up with my local neurologist at my next visit. That is in March - unless I reschedule.

It is really unfortunate that the leg tremors were not an issue when the neuro workup was done at NIH. I am finished there now so I will have to depend on my neuro doctor here.

I came to this forum to see if what I am experiencing matched up with what is happening to those who have confirmed OT diagnosis. I am thinking that my situation differs in that what I have diminishs as the day goes on - being worse in the AM and slight at the end of the day. camm

Camm: I think you are right in your observation with your situation that you are worse in the AM and better in the PM. Normally those of us with OT are generally very tired from the OT events during the daily and the PM is worse for us. I hope you find the answer, Gloria

The lead up events to this have been going on for years. I was previously a health care professional myself and I am so frustrated that I have to do the research - present the possibilities - and wait out the endless testing. Every diagnosis that the doctors have given so far have been wrong - so now we will go back to another of the tests that I suggested. All in all - discouraging. Thank you for your answers. I don't think OT is the answer but I thought I would drop in and chat with people who had the problem.

Best of luck. Claire