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>Hello all-- > I have written several times on behalf of my mother who was diagnosed with >PD about 1.5 years ago. Until recently we have had no reason to question that >diagnosis as her symptoms appeared to be classic PD. But for several reasons, >we are now questioning that diagnosis. I am hoping that perhaps some people >in this group are familiar with parkinson look-alikes, i.e. other problems >that cause PD-like symptoms. Our first reason for suspiscion is that Sinemet >seems to have no effect whatsoever on her. There is no on/off. She can't tell >the difference between when she has taken it and when she hasn't. In fact, >she has gotten worse over the last six months (since starting Sinemet) than >she did in the whole first year since diagnosis. > Our second reason for questioning the diagnosis is that PD typically >progresses rather slowly. It was a slow progression for my mom at first but >recently it has changed so dramatically that I could see a difference in her >in a matter of *days*. Two weeks ago, she was playing tennis, had a strong >clear voice, could drive a car and keep up with most normal activities. Now, >she cannot retain her balance to walk around the house without falling. Her >speaking is very slow. She appears to be intensely uncomfortable and does >not wish to discuss the problems she is having. > It is as if her PD has progressed five years over a period of five days. >In all my reading on PD I have never heard of such a rapid change in someone >except if they have experienced some sort of traumatic event, which she >hasn't. We are really at a loss. We are also looking for a new neurologist, >one who has more experience with PD. If anyone has any ideas about what is >going on here, I would love to hear them. I have really been enjoying this >group and am learning a lot. Keep up the good work. > > --Ann Strozewski Ann, my name is jeffrey romanyshyn and i live in santa barbara, ca, pursuing a ph.d in clinical depth psychology at pacifica graduate institute, but i grew up in irving/dallas and i know utd well. my mother was completing her ph.d there until she passed away suddenly in july, 1992, and my father, robert romanyshyn, (formerly of the university of dallas and now at pacifica in santa barbara) taught a graduate course there for many years, i believe through the humanities dept, on psychology/phenomenology and related topics. i am 27, and have been diagnosed with pd for nearly 2 1/2 years, but have always questioned it. i have had two copper urinalysis to test for the possibility of "wilson's disease", a blood disorder relating to copper which causes many pd symptoms but is very curable. the results were strange enough to warrent my taking a trip to the u.c.l.a. medical center; a friend of mine in the pacifica ph.d program works there, and he recently showed my medical records to three neuroligists there. two of them specialize in mis-diagnosed pd patients. it was the opinion of all three that i am mis-diagnosed and indeed i have "wilson's disease"! i have not been in contact with these neurologists personally, but plan to call them this week. suffice it to say, i am not holding onto false hope, but i am excited. i have never heard of the situation you described about your mother: the rapid deterioration; i'm sure someone on this list can help. i am somewhat confused regarding what you said about sinemet not affecting her, no on/off period and she cant tell when she has taken the med and when she hasn't. do you mean it doesn't help control tremor? when i lived in dallas from 8/92-7/94, i saw dr. ron tintner at ut southwestern med. he is no longer there, but they have a good neurology dept. you might check it out. i currently see dr. j. william langston at the parkinson's institite in sunnyvale, ca, near san francisco. this is one of the top pd research fascilities in the world and the doctors are good. the number is: 408/734-2800. i hope this helps. best wishes, ------------------------------------------------------------------------------ jeffrey r. romanyshyn, m.a., [log in to unmask] *film at 11!* deep in the cave we wander, lost, film at 11! j.r. romanyshyn 10/21/94