Reason for PSP Neck Survey

When investigating the symptoms of PSP on the internet, there seems to be little information about neck position/flexure. Many descriptions tend to borrow off each other, and mostly refer to PSP being associated with retrocollis (while Parkinson's is associated with antecollis).

I found a quote of a quote of a neurologist on the CurePSP site to be very questionable! They said " you can go into a movement disorder clinic waiting room and deteremine if people have PSP or MSA based upon where their neck points. Antecollis (neck forward) is common in MSA. Retrocollis (neck flexure backwards) is common in PSP".

I am assuming those who have replied to this little survey have the correct diagnosis of PSP, with supranuclear gaze palsy (and not Parkinson's or MSA - that rarely have gaze palsy). Then, if I've counted correctly, out of 19 PSP sufferers, 8 showed retrocollis, 10 showed antecollis and 1 had neither.

I have seen the occasional reference that implies retrocollis is not necessarily a predominant feature of PSP. This should probably be reflected in future literature written on the subject of PSP symptoms. It would be good if a movement disorder neurologist could comment on such findings on this forum.


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7 Replies

  • Dear Strelley,

    AAAaaHHhhh PSP, MSA, CBD & ... & .... The characteristics and symptoms that act as the descriptors to determine if one has one or another...What does the future hold? In the next ....... what will we see - At the very least phenomenal changes in diagnostic methods, tools and research and collaboration of data and...

    Accuracy will be more indepth and open to question by so many. For like those who read and/or use this forum we realise full well that knowledge shared is knowledge gained.

    With such a huge array of communication options through electronic means and people available to share their knowledge and learn.......


    Alana - Western Australia

  • dear strelley

    thanks for the update wbat does it all mean though - i have my neck tendind to go forward and i have the eye problems too ?

  • Hi Shasha

    How are you?

    With eye problems and neck forward it's still OK to be diagnosed with PSP (some doctors describe most PSP sufferers having their neck flexing backwards, but really the neck can be forwards as experienced by many on this forum). Hope this makes sense.

    Take care


  • My husband cannot bend his neck backwards.. he is always forwards and sideways --to the left !


  • My husband neck drops forward and setimes sideways eyes gaze down &poor saliva control

  • We are fortunate so far. Neck is stiff but doesn't tilt down or back.......yet.


  • I didn't participate in the survey but I am 100 percent retrocollis. I posted an update today after being off this site for some months and made reference to my neck problems. My chin has been up with my head tilted back for at least a few years. It's lead to a pinched nerve and arthritis in the cervical column. I can no longer turn my head to look at something, I have to turn my body. Tho my chronic pain has been better managed the last months, my neck is a killer, in spite of a Fentanyl patch, muscle relaxer, etc. In fact, last week, had my hair cut for the 1st time in months. She brought me back to the chair and asked me to tip my head back into the tub. I couldn't; no flexibility and straight as a board. It's as if there is a metal pipe in there that disallows movement.

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