Wow. So sorry you are going through this. Just wanted to say that your mom's behavior is not typical PD. We get more like an obsessive compulsive disorder and a hypomania kinda like the manic end of bi polar minus the really low mood swing. I think your idea that your mother has a drug induced schizophrenia is very sound. I do know that with longer term levodopa use that we, despite our dopamine deficit, can experience hallucinations followed by psychosis, so if your mom has had normal dopa levels all this time I cannot imagine what your family is going through.

If I were you, I would make appt for my mom at nearest research/university hospital; some place where she can be assessed by both a neurologist and psychiatrist plus have brain scans done all under one roof. They tend to take team approach and confer so you benefit from multiple insights into what is going on with her. Before you go into doctor create a timeline of the last 15 years including med dosages. Also, request copies of all her medical records.

Finally, if a doctor says your mom can stop levodopa at any time, then run for the door. It likely can be stopped but either in a hospital setting or very slowly over months or even one year with guidance of a doc.

Your ordeal highlights how we desperately need better diagnostic tools. We have someone in the forum misdiagnosed for 27 years. There are no longer any excuses as brain scans can serve as more solid proof of PD. I guess it wil come down to people filing lawsuits. I am normally against that sort of thing but I honestly think that is what it will take to see things change.

Hang in there!

Laura

Thankyou so much thats great information. We tried once to go to a hospital nearby that specialized in movement disorders and after getting her file from her doctor they said he was doing everything he could and they refused to see us! That happened more than once. What really bothers me is all the different doctors she seen ,even though they didnt beleive she had parkinsons none of them suggested it might be the meds and made any plans to get her off, it seems obvious to me who knows so little , that these problems could be the meds. It seems to be like they are all trying to cover it up. Very disturbing she has one doc finally weening her off but has not mentioned at all this could be the problem, and said she may not ever be able to come off the levadopa. I will get to the bottom of this though. Its also messed up that all over the internet they say a large number of people are being misdiagnosed but I cant find any of them or too much information about it.

You need to be aware that coming off l-dopa is difficult, sometimes very difficult, and ultimately it may only be possible to reduce it to a very small dose. I would certainly have another opinion, and go with Laura's suggestions. There will be hesitation about this kind of reduction of medication - there is little documentation of it, and doctors would naturally be wary. Some of what you mention seems to be a long standing akinesia, very reduced physical movement. Encouragement to move could bring results, though not if it puts you at risk of aggression, perhaps an experienced psychiatric therapist. I would urge you also, though it may be very difficult to do, to always view your mother's condition as one that she is not in control of, even though it may seem otherwise. What you describe is not usual or normal, and therefore she cannot possibly be leading a life with any fulfilment at all. It might seem as if she is choosing to be this way, but it sounds as though she is displaying drug induced behaviours. There is also something there, the stealing, that perhaps could be an compulsion, hard to tell. She sounds very unhappy. I would also not rule out that the pain she says she is experiencing is neuropathic, rather than non-existent. You may have to raise some of these questions yourself, and the one of drug induced schizophrenia. There is also the possibility that reducing the medication will leave her with a type of parkinsonism, anecdotally there is stuff out there that relates to this. From the experiences of people who have come here for help with misdiagnosis issues there are no real experts with this, each case is individual.

Some of the misdiagnosis info you are getting will be about people who nevertheless do have something wrong with them. The Parkinson spectrum covers a number of look-alike disorders that often differentiate into something that doctors recognise and know about at a later date, which are nameable, and not idiopathic Parkinson disease. Equally there will be those that differentiate into completely different disorders, or no disorder at all. All of these would be covered by the term misdiagnosis. Finally, it sounds as though it would be hard for any doctor to evaluate for the difference between psychiatric symptoms, drug effects, and real disorder without working with her for a considerable time. It would be difficult to see how anyone could unravel her problems easily. Having a stable medical course of action to reduce her meds and observe her response, and hopefully treat her for anything that emerged as a result would seem about the best thing to do.

You have a lot on your hands, best wishes with it, for all concerned.

Laura and Lindy. you two blow me away! Your intelligent and empathetic responses to this plea for help go 'way beyond remarkable. I wish I had just a fraction of your sensitivity and thoughtfulness. "Angels unawares", indeed!