'Appears to be PSP' - Actually a *positive* thing and a call to action and no I am not insane

[blazyb]

It has taken a week to cry and regroup - now I am centered around my meaning, purpose and am hopefully back in the game dealing with what 'Appears to be PSP' fightingparkinsonss.com/202...

[Boscoejean]

all we can hope for is more research or some alternatives

[DogsWoode]

We're here Ben. Beautiful essay.

[Sharonkay]

consider getting a second opinion. The first neurologist also said I had PSP.

Got second opinion. 2nd said no to PSP. She retired. Had to get another whom I've been with for 5 years. No PSP, not sure if Parkinsons. Some type of movement disorder though.

Never rely on first opinion when its your life they are playing with.

[blazyb in reply to Sharonkay]

I am thinking about it and here is my current viewpoint....two senior neurologists debated it 3 years ago and concluded at the time it probably wasn't. the one doctor who was sceptical at the time is now the one who thinks it is (the other has sadly passed away).

I have vertical eye palsy, I have significant balance issues and a few other clear symptoms but the main point for me is that it is moving clearly much faster than PD does - it is advancing like the clappers as the expression goes. I am 5 years on (49 yo) and in the areas of balance and gait it has shot forward and the Vyalev/Produadopa pump is helping but really not keeping it anywhere near at bay fast enough

So it is either a pretty aggressive PD or PSP which is responsive to dopamine to some extent which is PSP-P

There is no difference in the course of the treatment - PD with pump and all the exercise etc

So what is the point of a second opinion - I have asked other doctors and it seems to me no one is going to say definitively YES or NO - it will always be probable, appears to be, possibly so I will spend my precious time running the clock on an opinion

Instead I can try to spend the time with family, do advocacy write, exercise and if it turns out to be 'just' an aggressive PD then I am happily suprised.

I am new to this but this is my honest feeling - does that make sense to anyone or am I also going mad.

~Thank you so much for raising the point and I hope you know I respect the answer you gave truly

[Sharonkay in reply to blazyb]

There is so much needed to be learned about the disease and its "cousins". The cases keep growing and I pray they find a cure in our lifetime. Until they do, stay optimistic and keep up with the pump and exercise, if you can.

[kaypeeoh]

When I was diagnosed I went to google and found if it's not PD, it's something much worse like PSP. When the doc was waving his hand in front of me and telling me to follow his finger, he was thinking about PSP. But PSP is a lack of tau. At least there's a name for it and a theory. Like PD....

[Machoupa in reply to kaypeeoh]

What is "tau"?Sheelagh