Confused


#1

I am not sure if this is the correct place to post this  topic but here goes

 

Both myself and my mother have parkinsons and my maternal grandfather had some sort of Dementia, so my neurologist offered me a molecular genetics test which i had done in January , my neurologist said if anything was found they would offer testing to my family members , children etc .

I decided to phone up my neurologist secretary a few days ago to enquire if the results were back , i was told she would get back to me , well a couple of days later she called me apologising for the delay and said they had the results back but she had to check with the neuro as to what she was allowed to tell me ,originally the neuro was looking for a possible LRRK2  mutation, what the secretary said next confused me

She said they had not found what they were looking for but said i needed to see the neuro in clinic  to talk with him about how i wanted to proceed from here  i said i have a appointment with him in August  she said no i have cancelled that appointment and bought the appointment forward and i will get a appointment in the post for April, she was very careful what she said she did not say the test was fine she just said no LRRK2 was found  surely if there was nothing there then why bring my appointment forward 4 months and why would i need to discuss how we proceed if everything was normal so i am thinking maybe they found something they were not looking for ?


#2

Hello shelly65

I'm not sure I can be much help, but i thought your post deserved a swift response - especially given that's exactly not what you're getting from the neuro. You must be feeling worried and upset - I know I would be. April might be close in consultant's terms, but it's a whole heap away for the consulter.

You can see why the secretary can't tell you anything, but of course being told that is worse than being told nothing! Do you have a Parkinson's nurse? Maybe they'd be able to help you sooner or at least offer some reassurance. Or your GP?

Keep us posted, and take care.

Semele


#3

Yes Semele i do have a Parkinson's nurse she is due to visit me at home next week so i did think of asking her what she could find out ,,yes i understand the secretary cannot tell me it was the way she worded it that started alarm bells ringing , would the neuro have informed my Gp before he informed me ?

Yes i am a little worried at my last consultation with the neuro he did say if anything was found then testing would be offered to my children i can only assume this is what the secretary meant when saying  talk to my neuro about  how i want to proceed from here.

Thank you for your reply and advice i will certainly try my Parkinson's nurse .