swollen ankles - is this usual with PSP

my ankles are extremely swollen + painful is this part of PSP? I have not read of it being so. My GP has put me on a small dose of diuretic that I started this am & so far it is ok. I had some stockings here that are for travel to prevent embolus so I put them on & they seem to be helping. If anyone can give me some info on swollen ankles I would appreciate it. I see my Neurologist Dr Alan Kermode next Tuesday. His office did not give me a reminder so I phoned them & had to keep talking over the receptionist as she was doing it to me. This non reminder is the second time it has happened - she was going on 'we always remind people etc.' I decided to give her my mobile phone number & guess what she sent a reminder to it ! I don't expect anything from Dr Kermode as I understand there is nothing new for PSP - if that is my diagnosis - having that confirmed would help me so shall see about it! Cheers to u lot enjoy your Easter mary

16 Replies

  • Hi marytea13, I noticed you have no replies regarding your query. I only have direct experience of one person with PSP and swollen ankles was not evident as one of the symptoms. PSP doesn't preclude you getting other problems that are not associated with it, so if you were prone to swollen ankles prior to a PSP diagnosis then it may be just another 'cross to bear'. Happily your GP seems to have responded with some assistance.

    You say you haven't yet had a positive PSP diagnosis. It must be a very frustrating time for you not knowing what you are battling with, whatever the outcome when you next meet the neurologist, I hope you get all the help and advice you need. Best wishes, Jerry (one of 'us lot').

  • Thanks Quick gel thanks for your comment - I see my specialist next Tuesday but I am not confident of any outcome. mary

  • Best of luck on Tuesday Mary. PSP is notoriously difficult to diagnose and in fact I was told that it could only be positively identified postmortem (but that was 6 years ago, things may have progressed). To some degree one can sympathise with a neurologist's reluctance to make the diagnosis until there is very little else that can account for the symptoms in view of the seriousness of disease. Whatever the outcome I hope you have all the support you need and that you stay with this site. Kind regards, Jerry.

  • Hi Marytea, my husband suffers from swollen ankles. Especially during hot weather. He did take a diuretic for a short time, which helped. I think in his case, it was just the weather and lack of exercise, which he always use to do!

    Love Heady

  • thanks Heady I will do physio exercises + diuretic seems to be helping mary

  • Marytea13, My wife Sharyn has some swelling in her ankles and feet but not really bad. Our Hospice nurse said that inactivity (not walking) will cause the ankles to swell. I exercise the ankles by manipulating them along with her legs and arms at lease once a day. Of course not having the feet elevated can also cause some puffiness in the feet/ankles. I'm no doctor but I'd say it goes with inactivity and PSP. Jimbo

  • Thanks Jim yes in activity + at computer so will get a tablet & be on the lounge with feet up! But have done some exercises today the diuretic is helping - feet not as swollen. mary

  • Marytea13, Diagnosis of some of these brain diseases can take a while. If you have PSP but your vertical gaze has not been adversely affected YET, then you could be misdiagnosed. Also because these diseases are rare some in the medical profession have not seen a case and can miss the signs. I know of a woman who has PSP and she was actually diagnosed by her eye doctor. He saw the eye movements were not right and knew about PSP and thus said "I think you have PSP, see your neurologist". Hope you get a positive diagnosis soon. Jimbo

  • Thanks again Jim I saw an rheumatologist who though I had Parkinson & said see a neurologist but its not the big P but rather PDP p I think + neuro nurses Mary

  • Dear Mary,

    It is great that your GP has picked up on it and started treatment, and you are seeing your neurologist.

    My husbands lower legs are swollen and there is a darkening discoloration of the skin. My husbands GP spoke to me at great length about how John legs and skin in that area would become and now are key indicators to monitor overall health and mobility.

    John has kidney function tests and when it was first noticed the GP gave an immediate referral for DVT's.

    Because of the extra pressure to his skin - pressure stockings have helped enormously along with gentle massage John is reluctant to sit and elevate his legs above waist height (as recommended by Drs) because of pain he feels in this lower back from doing so. The build up of fluid started when he was still very mobile. John's skin does weep and requires regular dressing and antibiotics. He is on a lot of Parkinson's type medication for which there are side effects.


    Alana - Western Australia

  • Dear Mary,

    Given your neurologist is linked in heavily with MS - perhaps he can refer you to the hydrotherapy unit at MS Bentley who as understand now provide full support services for neurological conditions other than MS (?).

    - Mind you I think it may involve a bit of travel - perhaps too much??

    Regards, Alana - Western Australia

  • Thanks Alana I can get a taxi as have access to volunteer task force transport but shall see what Kermode says on Tuesday. I feel changes are happening rather fast now in my body that were not there before. e.g. I often type double letters - without spell check I would be lost! Cheers mary

  • Dear Mary,

    Wouldn't worry about your typing skills - that's what computers are for?

    - plus there are some nifty little software programmes around to reduce keystrokes. The Independent Living Centre at Nedlands purchased one for John - and it works a treat - Perhaps it is an avenue to also pursue? (Yes - that list shrinks some minute then grows the next...)

    Regards, Alana - Western Australia

  • what is the list Alana? ILC I need to go there for something else! A call button - saw those free ones for seniors card but they only ring the numbers then go to 000 there is no direct communication with the client as its not monitored - monitored ones thru silver chain nurses cost a bit but of course may be worth that I have to find out. my physio group is on hols now - is there a social support group for PSP? I try to keep busy - go to W A Bridge club on Mondays - would love to go more often but physically that's all I can manage now. members there are v good to me - I get to from via Volunteer task force taxi sponsored by HACC - most drivers are good some have an attitude problem to HACC customers from past experiences. I get v lonely at times. my husband has just gone to the gym which is great for him - he is 85 years old - Zoe his dog = 18 years old & will be taken for a daily walk later! Zoe will come & find me. Cheers Mary

  • Dear Mary - The list is just what I use to refer to everyday life. When one thing is sorted out another one appears..

    i don't think there is a social support group fro PSP. However the MS Society were looking at setting one up through their NCCCP unit (Neurological Coordiated Community Care Programme (?) to includes MSA and CBD and others.. Perhaps it is worth giving their manager a call? perhaps your Neurologists receptionist could take the task on board???

    Regards, Alana

  • hi mary tea well I have psp and slightly swollen ankles I saw my dr about them but he did not see very perturbed by them so I went merrily on my way and have thought no more about it until you sent in your blog then I thought ive got a set of them anyway they have not given me any trouble so far mate.. I do exercise and do a fair amount of walking as well as my wife loves shopping not for food or anything as boring as that but she loves to look at dress shops which I find boring so now ive taken to sitting on the settee and playing the waiting game

    now i would have responded sooner but I have been having a little holiday with my wife in our caravan no dress shops not much of anything really\\only sunshine and fresh air in a little village \\\\\ just right \\

    see yer peter jones queensland Australia psp sufferer and dress shop sufferer as well\\\

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