MY KNEW NEUROLOGIST DIAGNOSIS. ???

[export]

HI seen a new neurologist

THE DIAGNOSIS . Adanced parkinson's disease

Bilateral STN DBS

Dopamine Disregulation Syndrome

Hyper Somnolence.

Can any one tell me what she is talking about .

your EXPORT.

[Beachdog]

en.wikipedia.org/wiki/Dopam...

Hypersomnia is a disorder characterized by excessive sleepiness.

ncbi.nlm.nih.gov/pubmed/181... for STN DBS

[gazelleuk]

Well you have parkinsons

your affected on both sides

you got no cells left to produce the chemical messenger Dopamine

You have execessive sleepiness

Are you going to take this lying down ! give her something to think about lad and fight the good fight.

[export]

Well girly

That,s my problem i would just lie down.

Just had a letter I am far from happy about.

I will tell you about if your interested.

yours EXPORT.

[gazelleuk in reply to export]

i'm well interested !

[export]

As I don't know your name I will call you girly for now .

My name is John and I have just seen a new Consultant Neurologist .

A cope of the letter sent to my GP was sent to me. The consultant she keep saying he denies this and he admits that as if they don't believe a word I say .

she write I have is Dopamine disregulation syndrome . I google it

Girly I would like you to do the same .

Please would you give me your opinion of some one with Dopamine Disregulation syndrom and how you would go about proving them wrong.

THANKS GIRLY.

yours .EXPORT/JOHN XXX.

[gazelleuk in reply to export]

John I think your new Neurologist need's her bumps felt. She is trying to be a detective psychologist ! What the devil is she playing at ! I do believe you have cause for complaint.

Firstly I would need to have a read of her letter and see the exact wording she has used in order to fomulate a reply.

I would need to evidence your reply so that it discredits her description. However it is difficult if she has stated it is her opinion because then you cannot discredit that not unless she has tried to evidence something which is totally incorrect and you can prove that is the case.

I'm here to help Ileene

[Moderator_1 in reply to gazelleuk]

In response to your comments above Gazelle. This article recognises Dopamine Disregulation Syndrome and its relation to Parkinsonsons. From my reading it is clearly within the domain of concern of a Neurologist. In fact many people are concerned that Neurologists do not pay enough attention to impulse control issues.

national.slam.nhs.uk/wp-con...

[gazelleuk in reply to Moderator_1]

I hear you and appreciate the wording the Neurologist has used and because of my Nursing background I also know the way reports are written.

However with any report the use of words, describe the diagnosis. However with any diagnosis or opinion this has to be backed up by evidence. They have to put their reasoning behind their diagnosis and if they haven't then it is well within the patients charter for them to question the report. It is not a courtesy to be included in the copy from the Consultant letter to his Doctor it is a right.

The fact that the use of the words DDS being used should have been discussed with export . My comments have been made because of the information export has given in his post. The Neurologist clearly has not paid enough attention to export to have given him the reasons behind the diagnosis nor in-fact the explanation of how they came to the diagnosis.

However i have stated that it would depend on how the letter was written and that I would need to read it in its entirety to establish if there is cause for complaint.

I am fortunate that I understand your concern and can assure you that I know where you are coming from. It is not a situation that I would appreciate reading without consultation and understanding especially if something is written which could have detrimental effects on our futures. I am only going to read the letter and advise export if there is a need for him to make an informed decision on his actions if there is a requirement for him to do so. Thank you for your reply it is genuiinely appreciated

[export]

Thank-you .

As I go to see her on the 23-3- 12 .I will ask her my self.

Please could you tell me what ever you like about your self .All I know is you sound nice and you live on the East coast . If you do , I will do the same .

yours EXPORT/JOHN : - )) XXX.

[Moderator_1]

Just to clarify, the letter you received Export was written to your GP and you were copied in as a courtesy. The use of deny and admit are commonly used in medical notes in the way you describe and do not have the implications that she/he does not believe you.

This is the dilemma when any professionals (and not just medical people) write to each other and lay people reading their letters are not aware of the meaning of the 'professional language' used.

[export]

Moderator 1

THAT WASN'T THE QUESTION.

Could you tell me how to prove I don't have Dopamine Disregulation Syndrome

As you seem to be in the know. Or do they have to prove I have.

PUT THAT IN LAY MAN.

Yours EXPORT .

[Moderator_1]

Export

I do not know alot about this condition but found the article above. I don't know why they said you have it.

In your situation I would look at the description of Dopamine Disregulation Syndrome and prove I don't fit the description. Hope that makes sense.

[export]

THAT WHAT I AM ABOUT TO DO .thanks

yours EXPORT.

[gazelleuk]

Well pet it is a definate for me helping as long as you get that letter to me via email.

Having heard what is written so far I can say you have cause for concern but let me see it and I will assist you if possible