What makes the PSP diagnosis positive? Can anyone explain what are the composite symptoms that make it a sure PSP condition?

[hicval]

The neurologist is saying he has a 70% chance that it's PSP, but will know more in 4 months..

[jillannf6]

hi

i was dxd wiht psp in dec 2010 and it seems to be a no of factors

1 eyes - no tblinkign and closign a lot and downward gaze affected

2 lots of falls - in my case mainly fwd but likely to be backward as well

3 speech much quieter and difficulty swalllowing

4 gait and balance v poor

5 bujt really only can be dxd on death when the brain is examined

d( ( have donated my brain for this)

BUTI am still here bloggging iwth my now v dyslexic typign (!)

and am pretty sure i have the slow sort of PSP

I ha vea good movement disorders specialist

lol jll

adn ttry to keep smiling

[peterjones in reply to jillannf6]

to jill thats right mate keep on smiling and keep your chin up i have the same symptoms only most of my falls have been backwards i have had it since 2004 progresive supernuclear palsy we have a posh name

don't we and only a very few people get it apparently one in a hundred thousand people so i am told anyway mate i just wanted you to know that you are not alone

\ so take care i went for a jog this morning for about 3 metres but its a start is'nti

peter jones australia

[superman888]

This is an excellent question. I have often ask myself if my mum has an illness similar to PSP, but not PSP. Indeed I have read about some illnesses that can sometimes mimic PSP symptoms. However when I list the PSP symptoms that jillannf6 outlines, my mum has all of them, thus I am 99% sure my mum has PSP. I think maybe the most important symptoms are the vertical gaze palsy, falling backwards and swallowing difficulties. But as jillannf6 mentions you cannot tell until the brain is examined after death.

[Hidden in reply to superman888]

I wondered that also. CBD and PSP seem a lot alike. CBD usually affects one side (my husband has a bent left arm and drags left leg) but he does have the PSP eye issue). It is so sad we won't really know while it matters.

[jimandsharynp]

It is my understanding that PSP is distinguished by a few things from other brain diseases. First it usually begins with the person falling. Secondly, they usually suspect Parkinson's and give dopamine in some form. If the dopamine isn't effective this it is a indicator is probably isn't Parkinson's. Parkinson's usually responds to dopamine meds. Third, the eyes are an indicator it's PSP. In PSP patients they have issues with holding the head straight, looking forward, and moving just the eyes up and down. Particularily down. Most other symptoms can appear in other diseases but these are somewhat unique to PSP. If I'm way off base someone will correct me. Also the only positive way to determine any brain disease is by doing a biopsy of the brain which is usually reserved until the patient passes on. Hope you find this helpful.

Jimbo aka Jim P

[jillannf6 in reply to jimandsharynp]

Unr right jim

Liol,Jill

[jac001]

I would agree with these symptoms listed especially the moving of the eyes up and down that was the deciding factor with my mum. Also the dopamine not working as mum was treated for PD for 4 years.

[Hidden]

For my husband it seemed like his gait changed, started walking very slowly. He stopped talking as much and his voice grew softer. He couldn't sleep. They treated him for sleep disorder first. Then he started falling. The movement disorder specialist gave him a "possible" psp and put him on dopamine. (That was a horrible experience). The he was "Probable PSP" and after a year now he has all the symptoms in the literature ---coughing after eating, stiffness, left hand and arm are bent, not able to walk without walker, slow to respond in conversations but still talks. He has recently started softly moaning even when awake.We also saw a neuro-opthamologist and he confirmed vision problems were not the eyes but the brain. He said it was a classic PSP symptom.

Still the only thing he complains abut is the arm pain and that was helped from a tip I learned here---analgesic cream/gel rubbed on the skin.(Thank you for that!)