Has anyone with PD been tagged with Dopamine Dysregulation Syndrome yet by their Neuro? My wife's neurologist insists this is her problem and will not increase her combined Sinemet dosage above 950mg a day. Wife needs about 1200mg to function but this causes worse frightful hallucinations and delusions. My wife has been hospitalized recently and has been told to leave two assisted living facilities because she is too difficult to care for, meaning she is off a lot or has psychosis. Psych meds don't help her much.
Is anyone familiar with this? Is it time for a new neuro?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3465018/

It's always good to have a second or third opinion.

https://en.wikipedia.org/wiki/Dopami...ation_syndrome

I'm so sorry with what you are going through with your wife. What you describe does not sound like DDS.
DDS is more characterized by addict like behaviors in regards to taking and obtaining more and more Sinemet, and the negative behaviors that go along with that much of the drug. My dad began to have such symptoms prior to his DBS. He was self-medicating with increasing amounts of Sinemet, hiding pills so that if we tried to regulate his dosage he would always have a "stash", staying up half the night "punding", excessive spending, etc.
I would definitely consult another neurologist. I have no answers as to what might be going on, but a second opinion sounds in order. Blessings to you.

It is unusual for people to get to be "dopa addicts" , most of us are sickened by the side effects of over 1000mg/day. Best to try to cut the dopa to the minimum, and don't forget, a point is reached natually where we start to fail, and there is little that can be done about it.

My brother is in Independent Living and has PD. He had been really having issues feeling sick, stomach, dizziness, irritable, etc. etc. My Son went with my brother a couple of months ago for his Neuro appointment. (My daughter usually took him.) What was discovered/uncovered was my brother had been self-medicating and taking extra of his PD medication. At present, the facility has been bringing his medications to him (at an extra cost).

All medication, including over the counter meds have been removed. (This began with my son arranging for the above.) He admitted he had felt better for a little while when he took extra; thus began even overmedicating even over the counter meds to try to get him over the sick feeling (which obviously was because of his overdosing his PD meds). Since my brother seems to feel (former teacher) that he is smarter than most; he can be very difficult to reason with.

Last week, the facility had done some testing to determine whether my brother needs to be in the Assisted Living part of the facility. We're starting to be concerned whether he will eventually be asked to leave. He is upset about the medication being removed; but seems to be feeling somewhat better. (There was/is some concern that he did some stashing of his meds before the removal had been done.)

Sorry for all of you who are dealing with PD. Difficult for all concerned.


Gerry