Dopamine Dysreggulation Syndrome . I am... - Cure Parkinson's

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Dopamine Dysreggulation Syndrome . I am looking for anyone who has this . As this as part of there diagnosis.

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Hi I HAVE HAD PARKINSON'S FOR 18 years FOR 14 YEARS THE DRUGS WERE ON TAP . AT ONE POINT I WAS TAKING WELL OVER 50. A DAY . I SAID MANY A TIME THAT L-DOPA IS ADDICTIVE . WHICH I WAS ITS NOT... THE DRUG COMPANY,S now say some PD do take more than they need. More than 8 pills in 24 hours is a over dose. THAT IS WHAT I GET WITH NO HOPE OF A INCREASE. I PLAN TO DO SOME THING ABOUT IT AND WOULD LIKE SOME BACK UP.

yours EXPORT.

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JennyR profile image
JennyR

Hi there Export. I was more than a little shocked to read your story PD diagnosed at the age of 4????? What country do you live in? Are you under the care of a neurologist or special care group? Please don't do anything without the advice of your medical team. Perhaps. one of our professionals on the Board can step in here. Hopefully, someone will give you the help you need. Good luck..

Pete-1 profile image
Pete-1 in reply toJennyR

Ah, I think eport is saying that he has had PD for 18 years and for 14 of those years the drugs were unrggulated.

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export

I SORRY . I LIVE IN THE UK . BUT WHAT ARE YOU TALKING ABOUT ?

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Pete-1

Export, I and I think JennyR are a bit confused. Going back to your original question is there any chance that you could rephrase it. Thank you.

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export

t the xspete I thinkyou mean at

Pete-1 profile image
Pete-1 in reply toexport

No I'm sorry Export that doesn't help. It seems that you want to talk to somebody who has

Dopamine Dysregulation Syndrome so that thy can confirm your feelings on the matter.

I've heard of this condition which is basically addiction to dopamne but have never met anyone with it,

And as JennyR says it is shocking to have a diagnosis of PD at 4 years of age, You haven't miss-typed that by any chance?

I've just looked at an earlier post of yours in which you say you are 50 and have had PD for 18 years. Tha seems more likely.

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export

Pete-1 I know you are trying to help .Where dose it say ( PD at 4 years of age )

What is wrong with my question ?

Are you a moderator ?

Pete-1 profile image
Pete-1 in reply toexport

This is most peculiar. Having read on some other post that you are 50 and have had PD for 18 years, I now understand but there must have been something in your original question that made both Jenny and myself misread it. Looking at the original question it is not clear how I perceived your diagnosis of PD at 4. |Not to worry I feel that that is all cleared up now.

On tap would mean freely available with no limit or regulation - yes?

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export

THIS IS FOR jennyR / Pete-1 DO YOU KNOW WHAT I MEAN BY ON TAP ?

JennyR profile image
JennyR in reply toexport

Sorry Export, I do not understand the term "on tap" as it applies to PD

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export

Hope fully some thing is happening now . I know i am not right My GP been round wanted me to go in to hospital today at 2 o clock .

yours EXPORT .

PatV profile image
PatV in reply toexport

hope you get some help. I've been upping my sinimet and DEFINITELY feel overmedicated at times to the point of being manic! I will be very interested in the out come of your hospital visit. Good luck and happy holiday.

Pete-1 profile image
Pete-1 in reply toexport

Well I hope for a satisfactory outcome from this hospital visit. Do you just feel something is not right or are there distinct things that you can pinpoint as being symptomatic of a particular problem? Anyway good luck and I look forward to hearing that you are back to normal upon your return home.

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