After 9 years and 9 neurologists, I finally have been diagnosed with OT. At first, I thought "no joke"--you are simply describing my symptoms. I always knew I had tremors when I stood! It was interesting to read some comments on your site that I can really relate to.
At first, I was misdiagnosed with MS, then there was a thought of "Gulf War Syndrome", so it was helpful to learn others "can walk", but just "cannot stand"! I have had to modify my job twice in the past 9 years; first I was a RN in the intensive care nursery--being "unsteady" and off-balance" just did not go well with starting IVs on tiny patients. So I became a Pediatric Nurse Practitioner until the tremors spread to my arms; trying to hold a little one down to look in his ears or mouth would "trigger" the tremor; so now I am a Family NP in internal medicine.
Although I'm not thrilled to know OT is so rare, and the cause is unknown, I am thankful there are a few medications to treat the symptoms, and I'm glad that so far I've not heard anyone reference "cognitive" deficits, which was a concern when I was dealing with the MS diagnosis. I've started therapy on mysolin about 6 days ago; does anyone else notice that fatigue-like excessive walking makes OT s/s worse? Does anyone else have a problem with leg/foot cramps?
- Maureen RN, USA