my father had an mr scan. nurologist said its most probably psp. what does that mean?

my father had an mr scan. nurologist said its most probably psp. what does that mean?

[JA10]

Hi steff123

I checked your info and saw that you have been dealing with a Parkinson's diagnosis before this PSP one.

Did you look up PSP? There is lots of info on this page and within the members of this group. I am on as my mum has PSP.

With the 'most probably has PSP', I would guess that the scan maybe didn't show up much and so they are going for a diagnosis based on symptoms. I recall my mum had the same thing, the next neurological appointment was with a specialist and the diagnosis was confirmed. The local PSPA person was there to offer support to us all. Do check their website if you haven't, they offer lots of assistance. Julie

[Hidden in reply to JA10]

thank you very much for this. yes unfortunately the nurologist from before had said its Parkinson. in 2017 my father had an mr scan. the nurologist back then said that my dad is Parkinson. now just recently my father had a new mr scan and the nuroligist says that is most possibly ' parkinsonism with psp'. I am really terribly upset . ın the new mr scan its wrote that some cell in the brain has been narrowed to 8mm which is can be observed in psp . so the doctor says its most probably psp. ı just wonder what the main clues are in psp

[Hidden in reply to JA10]

is there any more specific test for diagnosis for psp_?

[JA10 in reply to Hidden]

With my mum the symptoms that were strong indicators and specific to PSP, were the eye movement and balance.

For the eye movement, she initially had a slow response to request to look up/down/to the side. Now she can barely do it at all, but at the time when her specialist, Professor Rowe from Cambridge, asked her to look, her eye movement was slower than normal. The balance test they used at diagnosis and to track progression initially involved mum standing with her back to the doctor and them pulling her shoulder back towards them to try and make her fall over backwards. I would have stepped back to save myself once I felt my balance going, she didn't, they just caught her instead.

That is our experience, but what I have learnt from this group, is that there are quite a lot of different symptoms.

Everyone is lovely though and will over the next few days feed you with more info. There is a method of looking at back posts using the top bar apparently, though I have never got around to checking it out. Julie

[Kevin_1 in reply to Hidden]

Hi

JA10 / Julie summarises it pretty well.

They can run all sorts of eye movement tests and many more, together they lead to a diagnosis. However the slow eye movement, the PSP gait and an MRI seem to be fairly conclusive.

There are a number of 'varieties' of PSP including one which is called PSP Parkinson's. It makes little difference in the treatment of some of the symptoms. Excepting that PSP Parkinson's folk seem to get some benefit, sometimes, from Parkinson's medication.

[Hidden in reply to Kevin_1]

Thank you so much do this. Is it necessary for my dad to get eye tests for further psp diagnosis confirmation?

[Kevin_1 in reply to Hidden]

It depends how developed his symptoms are. They might have been very obvious and it sounds like the MRI scan was very clear. People with PSP have a particular 'signature' which shows up on an MRI.

If you are in the UK you could ask for a referral to a tertiary neurologist. The NHS is a tiered system. Local hospital (unless it has a specialist unit) is secondary and with complex cases they refer up to a tertiary unit for the suspected illness and they have the extra specialist equipment. You might want to ask your local neurologist just how sure they are first.

[Hidden in reply to Kevin_1]

Yes I should do that. But when I asked the nurologist he said confirmation of diagnoisis can only be made pathologically. My fathers eye movements are not slow yet he has pain in eyes since 10 years. His walking is slow. His speech is coarse. In the mr scan it wrote something in btain has been narrowed to 8mm which 'can be observed in psp". I dont know. The doctor said both parkinson and psp have same medication..its nerve racking not to know

[Kevin_1 in reply to Hidden]

Hi Steff123

Do ask for a referral to a tertiary level neurologist.

Only one kind of PSP responds to Parkinson's medication. That medication just reduces the symptoms. It does not treat the disease.

Most the folk here, myself too, have been through the stage of not knowing and dreading answers.

There is not yet a cure for PSP. There are some medication trills taking place in various countries including the UK which might slow the progression of the illness.

The diagnosis is not the end. There is plenty of time to share and love.

The PSP Association is very good.

Here is a link to their information pages.

pspassociation.org.uk/infor...

They have a superb helpline... Do call them. 0300 0110 122

They also have local 'reps' in a lot of areas around the UK. If there is one in your area they might be able to come and see you at home and explain things to you.

There are many here on the forum who will give you support and first class information.

Things will be difficult at first, but most of us learn to cope and kep going as we get the hang of it.

I'm so sorry you are facing this. Take hope, it is manageable.

Warmly

Kevin

[Hidden in reply to Kevin_1]

Thank you so much for this. Thank you. May I ask which medication actually slows the progress of psp?

[Kevin_1 in reply to Hidden]

No problem.

Talk to the PSP Association about getting your Dad on a trial. There is a medication which is being tested to see whether or not it slows PSP down. No-one knows if it does yet. The PSP Assoc. might be able to refer your Dad to a trial, but then he would have to fit their criteria too.

Good luck

[Hidden in reply to JA10]

What is their website?