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This is very interesting information about your daughter. Thanks for sharing. I am new to this group. My husband has had Parkinson's disease for about ten years. He has had 4 neurologists during this time. One took him off sinemet cold turkey in '05. My husband would freeze, not being able to stand or roll over in bed and when he could walk, his balance was atrocious. We went back to the neurologist who decided to wean Dick off slower, cutting the dose each week until he was finished. We went on vacation across the country for two weeks. When he finished the decline in medicine, the same thing happened to him, so the neurologist said he didn't have Parkinson's, but he didn't know what was wrong. I said you can't give him news like this without a referral to another expert, so he arranged to send him to the Barrow Institute in Phoenix. That expert said he had PD and also beginning dementia. Then in spring of this year, Dick went to a new neurologist (the other three had left the practice by this time.) That visit happened because we wanted to acquaint the new neurologist with Dick's medical history. The neurologist suggested we see a different neurologist expert in Parkinson's. She keeps a small practice, so he could not be seen until July 31st. His problems escalated. He began to fall and spin like a helicopter, then he could not eat without making a big mess and looking very drunk. He fell a couple more times and then really lost it. He was hospitalized after the EMT found his oxygen SAT was in the low 70's. He was more and more disoriented. and came home and became violent. It seems he had a urinary infection , not to mention that the took him off all his meds. He was hospitalized a couple more times. Even though I asked every day for a neurologist to see him in his present condition, the hospital denied the request even though they had no neurologists in the hospital. His urinary infection was treated and he had no more violence after a two week stay in a behavioral program. He was still very sick, however,. He went to see the expert who agreed that he had Parkinson's and probably Lewy Body Disease. She put him on a lot of vitamins in addition to medicine. I do not have my husband back. I live with a nice man, my husband, who declined so fast that he hallucinates, can't talk so one can understand him sometimes, tends to fall, and has severe learning disability, among other things. He has night and day sweats that I have read are dangerous, but the doctors poo, poo! My body is going fast from lifting him several times a day and my mind often is worse than his. It is very sad. We also worry about losing everything we have saved to take care of us in our old age so that we won't be dependent on our children. Everyone in the family is hit by the side effects of whatever happened to him this past spring and summer. He is now on three half pills of sinemet per day and lots of other medications. Life is a roller coaster of hope and despair. He is going to a nice psychiatrist who is trying to balance Dick's med so that he can have a semblance of a normal life. I'm waiting for the other shoe to drop. Elaine angela hamon <[log in to unmask]> wrote: Hello All, Margey, my daughter, had her social security exams yesterday. They diagnosed her with stage 3 parkinsons. She had some tests for the dementia, and an eye test for wilson's, and they reviewed the negative blood tests for other diseases. they also went over family history of parkinsons (my grandma). The Dr who took her off Sinemet has been formally reported for negligence. She received a sample of medication, because she had a seizure during exam, and today she is walking without assistance. I was not in the office with her, but she tells me the Dr noted speech difficulties and said she could expect her award letter in a few weeks . I had already taken her back to the referring clinic and now, with her social security diagnosis in hand, they can rest assured that their treatment plan was a good one. All the trouble had only started when they referred her to a neurologist, wanting to make sure that their treatment was right. Thank you all again for your help with advice on medical records, dealing with Drs referrals, and so forth. You guys really gave great advice! _________________________________________________________________ i’m is proud to present Cause Effect, a series about real people making a difference. http://im.live.com/Messenger/IM/MTV/?source=text_Cause_Effect ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn --------------------------------- ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn Looking for last minute shopping deals? Find them fast with Yahoo! Search.