Went to see the GP again yesterday Re Mom

[rainbow33]

After being in with him for 10 miniuites with him saying we dont need a diognosis for my Mom. He then turned round to me and said what do you want me to do and I said contact The neurologist at the city hospital that has not sen Mom for 2 years so he can see how she has detereated. So Fingers crossed we get some answers.

[hmfsli]

Hi Rainbow,

I hope the referral comes through quickly and you get to see a neurologist who is willing to listen to you.

h

[kay1]

one less learned is that carers, families have to speak up to get as much help as possible for their loved ones.

x

[shasha]

that is quite shocking rainbow - good luck with your referral

[bubbie]

hi there, so sorry but there are no answers out there. its awful. my husband has psp now 5 yr. and nothing seems to help. the medication just does not help psp patients. we have been all over ny, nj , florida. they just dont have any answers. dr.golbee in N.J. is the expert on psp and there just isnt enough people that have psp. and the money for research is not good. we need to hope and pray that one day we will hear good news buy it might be to late for my dear husband. he is struggling so and declining fast. take care and write me back bubbie

[Hidden]

You are doing the right thing, stick at it. It's hard enough fighting your corner with PSP let alone without a diagnosis!

Make sure you ask the neuro what experience he has with PSP and what he is going to set in motion for you. If he has none ask to be referred somewhere where they do have experience.

Write down what he says and keep it. Infact keep a diary as in the future when you name dates and people it makes them sit up and realise they need to do what they say they will do. When people realise you have their name it makes them the responsible professional and of course you can ask for them again to make sure it is consistent treatment etc.

[peterjones]

hi bubbles i think that was a terrible way to be treated\ when he said to you WHAT DO YOU WANT ME TO DO\\\ ITS A PITY '' YOU NEVER TOLD HIM '' BUT YOU MUST BE A NICE LADY

AND WOULD NOT SAY THE THINGS I AM THINKING\\\ AT LEAST WITH MY DR HE SAID I DO NOT KNOW MUCH ABOUT IT YOU MUST GO TO A SPECIALIST AND PROMPTLY WROTE 0UT A REFERAL FOR ME THIS WAS MY 3 RD NEURO BY THE WAY\\\\\\ LUCKY NO 3 I WENT TO SEE HIM I TOLD HIM THAT HE WAS THE 3RD ONE THAT I HAD HAD BEEN TO AND THE LAST ONE I WENT TO WENT FROM MOTOR NUERONE TO PARKINSONISM

AND WHEN I QUEERIED THIS SHE SAID TO ME YOU WILL NOT BE THE FIRST THAT HAS BEEN MISDIAGNOSED AND WONT BE THE LAST AND JUDGING BY THE PEOPLE THAT WRITE IN ON THIS SITE THAT WAS THE ONLY THING SHE WAS CORRECT ABOUT\\ANYWAY MATE THIS LAST BLOKE HE LOOKED AND ME AND SAID YOU HAVE PSP WHICH I REPLIED WHAT THE HELL IS THAT HE GAVE ME A BRIEF OUTLINE OF WHAT IT WAS AND THEN SAID YOU CAN LOOK IT UP ON THE INTERNET BUT THERE IS NO CURE FOR IT NOT EVEN A TABLET I THOUGHT THAT'S NICE I MIGHT JUST AS WELL STAYED WITH THE MOTOR NEURONE EXCEPT I WOULD HAVE GONE A LOT QUICKER BY ALL ACCOUNTS THE MORAL OF THIS STORY IS \\\\ YOU HAVE TO STICK UP FOR

Y0URSELF M,ATE AND DO WHAT YOU BELIEVE IS RIGHT AND FAIR FOR T\HE PATIENT AND THE CARER SORRY TO BE SO LONG WINDED TO TELL YOU THAT BUT ITS GOT IT OFF MY CH\EST AS WELL\\ TAKE CARE GOD BLESS PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[CyndyLouBlue]

Never take no for an answer. Never allow someone elses lazy attitude to be good enough for your loved one. PSP is an awful disease and there are so few "answers" but we have found that there are small things that can help a patients sense of well being if nothing else. However, we have had to push. Doctors just hate to say that they don't know and they don't have the answers. Good luck with your journey and stay in touch with this forum as the support here is wonderful.