Help. I'm looking for any info or input or anything. My mother was diagnosed with Parkinson's disease 15 years ago and now just recently they have said she does not have Parkinson's but mental disorders and her inability to move is in her head.She went to a doctor 15 years ago because of cramping she had in her hand after tests was diagnosed with Parkinson's.She was a completely normal 43 year old working women, sweet, funny, everyone loved her and never had any prior mental problems.But then about 5 years ago she started to change,mentaly and physically. She up and left my dad and started her weekly, soon to be almost daily calls to 911. She went from being "normal" to someone who does nothing but scream curse ,curse god,and cry and ask to die almost non-stop(its been awful for my children to be around) and does not move at all now but expects everyone to CONSTANTLY move her around. Before she stopped moving she became a clepto stealing anything from me or anyone from credit cards,christmas money,(3 christmas's in a row) to old dishes or just about anything useful or not. I have lost many precous things and useful things to her. She disrespects everyone in many ways.Our entire family has disowned her and she has lost all friends but one, who now is about to be done with her because like everyone else now beleives its all in her head. I have stopped talking to her for different reasons many times but have always let her back in because she had no place to go. With the doctors at the hospitals and family telling me it was in her head I refused to beleive them until now. I could not understand how someone could go to the bathroom on themselves ,not walk or move and scream in pain all the time was just imagining it with no real physical problems. But this last christmas after being up for three days waiting on her, carrying her,(pregnant but she didnt seem to care) moving this arm rolling her over, spending an hour to get her to the bathroom (and she would have to go every two hours) she proved to me what everyone had been saying. She went from not moving the entire three days at my house, to physically holding me down by my hair (because i left her alone for ten minutes to attend to my son) to all of a sudden not being able to move again when the cops arrived. She woke up my entire building at 3 in the morning christmas eve screaming for help and throwing furniture. I am now facing an eviction because of her dissruptions. Too make a LONG ROUGH story short, she has become completely mentaly unstable and does not move almost at all. She has noone. But when she does move she moves perfectly finebut that is very rare.She just came out of a nuerological center where they evaluated her and said she has mental disorders but no physical disorders. After 15 years of being treated for Parkinsons she was told she does not have it. Now my main question and concern is the meds. Her doctor said because she has been on levadopa for so long she may not ever come off it. But my problem is wouldnt the meds be the cause of her problems!? I have done plenty of research and know too much dopamine can cause schizophrenia. If she never had a lack of dopamine and was on the highest dosages she would be getting too much causing schizophrenia!? Right? But noone is saying this.I am wondering if its true that she might have to stay on levadopa? Do you think she could ever be normal again? I have been begging her to sign a paper so I could talk to her primary care doctor myself but she just wont do it. I am allowed to talk to her neurologist and have a few times over the past couple years but he either didnt awnser my questions or would cancel our appointments. I now beleive this is somthing he might have known for a while but didnt tell us.He has defintely acted weird last couple years. Im sorry this is so long,trust me it could be much longer, but i needed to get the basic facts out. I am here looking for anything. Information, opionons ,questions or just someone to talk too. I beleive this is from the medication.What do you think? Can she get off it? Will she be ok ? Maybe u think she still does have parkinsons. Any similar stories anywhere? What do I do? I cant have her around for many reasons right now,Im in jeopardy of loosing my home because of her and two of my children have started to mimick some of her traits.The nearby mental ward kicked her out and wont even take her because she is so mean and out of control. HELP!!

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!

Dear Daisy, You do need help. I am so sorry you are going though all this with your mother. She needs as the other post said an evaluation complete with neurological and mental assessment. This is way out of control, and making your life miserable and that of your family. A teaching hospital, or the best facility in your area would a be a start. You can also Baker act her and they have to take her into a mental facility at least for a few days for observation. Something does needs to be done, of course evaluationfor the medication should be looked at. I would trust others on this site who know about ladopa and long range withdrawl of it. You can also call the elder hot line in your area, for other directions to try and get help. There is also a National elder care hot line number, who may have better alternatives than even your local centers. Do get on the phone and start making calls. I feel so bad that I can't do much but offer comfort to you. It is a terrible situation you are in and and I hope you can find some help immediately. There should be help in what ever city you are in. Nobody should have to face this kind of issue alone. No one person could deal with this by themselves. All my best to you. ginnie

Two other suggestions:

Have you had your mother tested for Lyme Disease? It can be in her system for years before any symptoms show and there have been cases of secondary Parkinsonism depending on where the brain is affected. This could be a part of why she was misdiagnosed in the first place. It is a long shot, but your mom's behavior reminds me of what I have read about "Lyme Rage" where the affected person alternates between aggressive/violent behavior and hypersomnia. Sounds a bit like your mother's ups and downs. See this article with case studies.

Finally, you might want to call your local Catholic Social Services? Don't be put off by the religion; they help people in all walks of life. They have Social Workers who offer mental health services and programs for the aging; they might be able to offer some referrals right in you area.

Keep us posted!

Laura