How many years did you have symptoms for before you where diagnosed with psp please

I have had many tests, first thoughts where small strokes due to having AF, then MS and having gone through tests this all negative. Left now with Balance/Vertigo problems and because of years of tinnitus and permanent hearing loss given Meniere's diagnosis. Also having problems with falling and missing doorways and catching my shoulder on door casing along with catching hand on sides of cupbards. I must look as if I am falling forward as some people put there hands out to push me back, although at times I can feel I am on a hill and start falling backwards too. muscles in my limbs so stiff at times and I feel like I am walking in a wind tunnel. Waves of pins and needles over my head, some incontinance. My eyesight is awful and I have given up driving as I can't work out where things are on the road and invested in long and short sited glass's, I now catch a bus but have to take a deep breath when I get off because I am always dizzy and need to look for things to grab before the doors open. I do take warfarin so aware of falling and bleeding. I see a Neuro every 6 months for a review but he is not coming up with any answers although I am grateful he is seeing me. Physio has been getting me to slow down when I am walking as I did not realise I was walking fast, which is odd, this has helped with falling. Can anybody help me?

12 Replies

  • Hi poppyseed

    So sorry to hear of all your health problems.

    Some receive a PSP diagnosis as early as 1-2 yrs after first symptoms, but others may have the condition for many years and only be diagnosed on their last 1-2 years (or less) before they pass away.

    You seem to show some symptoms of those conditions mentioned....Meniere's and MS.

    Have your visual problems been identified? Has any Dr checked your eyes for Vertical Gaze Palsy (unable to voluntarily look down or up) ? This is a cardinal symptom of PSP (hence it's name).

    Others may have some advice.

    Take care


  • thank you for your reply, I appreciate your help. Nuero allways checks my eye movements so I can only assume he has checked for this eye disorder but I will ask. Just watching Utube stories and my progression seems to be slower and has not caused as much damage to my body with what I can see from Utube.

  • Hi again

    Hopefully your neuro will find a diagnosis. You do not mention if the neuro has already suggested PSP. There is a classical (Richardson's) PSP with a shorter duration and another form called PSP-Parkisnon's that has (as its name implies) more Parkinson-like symptoms,and a slower progression with less severe symptoms (and responsive initially to Parkinson medication). I hope your neuro will sort this out. If they have not found vertical gaze palsy as the problem with your eyes by this stage, I suspect you may not have classical PSP. The fact that you are still walking "unaided" is suspect, since most classical PSP sufferers require some aids within 3 years of symptom onset (and many actually need a wheelchair within 5 years - like my wife).

    It must be so frustrating not having a proper diagnosis. Remember it's also possible to have "other" disease conditions alongside PSP (etc).

    Cheers and let us know what the neuro says on your next visit.


  • HI Strelley, My husband has been told he has PSP but can the neuro tell which type a patient has.My husband has it about 5 years still walking around with a stick although he is falling and freezing quite a lot. His speech has gone, and he needs botox every three to four weeks on his eyes to keep them open. His swallow is very bad, and has difficulty with his eating although he is still determent to eat anything.

  • Hi Putland, you maybe better starting a new question and Strelley will pick up on what you need. xx

  • Hello PUTLAND

    I'll try and answer your query as simply as possible in a short response (but sorry if it becomes a bit technical).

    The first thing to remember is that PSP (of any type) can only be definitively diagnosed at autopsy. They find certain characteristics in the brain cells that identify the disease as PSP (and other over-lap diseases may be present).

    So the only way neurologists can tell (guess) the type of PSP is by clinical signs.

    It's has become a bit more complex over the years because they have come up with subtypes of PSP.

    The classical (Richardson's) PSP is the main one and from your brief description of your husband, it appears he probably has this type. The key clinical signs are vertical gaze palsy (and other eye problems like slow saccades) and falls (usually backwards) in the first year of symptoms along with a lurching gait. Unfortunately, in some sufferers the vertical gaze palsy develops later in the disease (although other eye movement problems are earlier, but they are not often "checked" by Drs). Most sufferers (not all) do NOT have a resting tremor. The response to levodopa medication is absent or only minimal for a short period.

    The other type that is often talked about is PSP-Parkinson's (PSP-P). From its name it has symptoms very similar to Parkinson's. It has a slower course, with milder symptoms. It usually presents with slow movements, tremor, starts on one side of the body, and responds well initially to levodopa medication. After about 6 or 7 years this type begins to look more like classical PSP.

    There are other types, but I'll avoid describing their symptoms (PSP-pure akinesia with freezing gate; PSP-progressive non-fluent aphasia; PSP- postural gait and instability disorder; PSP-cerebellar; PSP-corticobasal syndrome). Sometimes PSP and Corticobasal Degeneration are mixed up and misdiagnosed.

    This can be very confusing even to some doctors, especially since some neurologists lump all these PSP variants together under one heading.

    The bottom line is there is no treatment to prevent, stop or slow down the progression to significant levels. Many neurologists will treat each patient individually (for symptoms) with a raft of medications and then observe what happens. Some neurologists will not prescribe any medication.

    Hope this helps a bit!



  • Strelley you are invaluable xx

  • thanks Strelley for taking the time to reply and you and your wife are in my thoughts. I will keep you informed xx

  • Mum had symptoms for at least 4years before reaching middle stage and when she began to exhibit freezing gait that I had seen in parkinson's in my earlier job as a nurse, I asked for her to be referred to a neurologist. He was convinced it was most probably PSP soon as he saw her due to her eye problems; looking down was difficult and very slow movements, balance issues and cognition changes. An mri and pet scan confirmed his views due to frontal lobar deterioration. Mum had a fast moving version and was 77. You may not be aware but there are many medical people who do not know about PSP and you need to get a PSP advisor to help investigate with you. They will be able to tell you who to contact. Best wishes x Dianne

  • thank you Dianne x

  • Our neurologist at the University hospital said that "early falls and balance issues are early markers for PSP". I do know that my dear wife started with balance issues. A sense that she would fall but not many actual falls. She began holding my arm or hand when walking to assure she wouldn't fall. She was diagnosed as Parkinson's first then PSP. She has the other typical marker for PSP which is vertical gaze palsy. That is the ability to see down or up without moving one's head. Normal people can move their eyes up or down to follow a moving object (vertically) but PSP patients tend to have to move their head to follow. Find a good neurologist who is familiar with rare diseases of the brain like PSP, CBD, and MSA. If they are sharp they will detect the cause of your problems. A normal GP doesn't see patients with these diseases often and might misdiagnose the problem. I hope you will find help and if you seek good help you will.


  • I see a Nuero who specialises in Ms at the moment, reading your message above Jimbo I need to change. thank you

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