Did anyone else have this?: I have had... - PSP Association

PSP Association

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Did anyone else have this?

BrianTheElder profile image
12 Replies

I have had walking difficulties for about a year. At first, my legs lost strength after walking. This got progressively worse until my legs now both have no strength and feel numb after walking only a short distance. I am also out of breath and unable to continue. My GP referred me to a consultant who immediately diagnosed lumbar spinal stenosis. I had a back MRI which showed that I had that as well as lateral recess stenosis. I also had a brain MRI but heard no more. On my next visit my consultant told me that, from the brain MRI, I had PSP. The leg problems have been dismissed, but I still have them.

I have done some research and I don't have any of the symptoms of PSP. No falling, no eye problems and I am still sharp.

Did anyone else have leg problems before they were diagnosed with PSP?

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BrianTheElder profile image
BrianTheElder
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12 Replies
easterncedar profile image
easterncedar

my guy’s first symptom was a dragging leg. He didn’t notice it really.

I wonder if you are on statins?

BrianTheElder profile image
BrianTheElder in reply to easterncedar

Thanks easterncedar

Sorry to hear that. I don't take statins, despite my GP's efforts!

REOC profile image
REOC

that sounds difficult. Mum started saying her feet felt ‘slippy’ and strange before she started falling and psp sufferers seem to always fall backwards. Maybe you need to ask to see a consultant about your scan and ask for more details and also follow up on why the other thing has been dismissed. Start by going through it all with your gp - it’s vital to find one who’ll listen and take you seriously.

BrianTheElder profile image
BrianTheElder in reply to REOC

That's one of the things that puzzle me. I have never fallen over backward. Just the occasional stumble forwards as befits a man of my age. Neither my GP nor my consultant want to listen to me.

REOC profile image
REOC in reply to BrianTheElder

I would speak to another GP - ask for someone who specialises in gait issues (if there is one) or anything similar. Or ask to go through your brain scan and have it explained to you - anything to get things moving again so you can get the facts and move forward with a definitive diagnosis.

Soul-girl profile image
Soul-girl

Hi BriantheElder

My mum had numbness in her feet and lower leg , with gait problems, she slowly lost the ability to walk. Consultants went down the CBD route with my mum but she was never properly diagnosed :( she had MRIs which showed she had stenosis in her lower back but that was it, my mum fell backwards but didn’t really have eye problems? I think everybody’s journey with this awful illness is slightly different.

Take care

Sue

ChocolateFaceTeddy profile image
ChocolateFaceTeddy in reply to Soul-girl

hi sue, I was diagnosed in March with CBD, but I continue to walk every day. I agree that no to people are the same at all. Just keep plugging away get the answers you require.

Soul-girl profile image
Soul-girl in reply to ChocolateFaceTeddy

Hi ChocolateFacedTeddy

Unfortunately my mum passed away at the beginning of January this year, her journey started around the end of 2017, it was a hard slog for her, we lost my dad in 2019 , she just wanted to be with him and now she is finally at peace , with dad ( she would ask him every day to come and get her) at the end she was so peaceful and out of all this misery.

Take care of yourself

Sue

ChocolateFaceTeddy profile image
ChocolateFaceTeddy in reply to Soul-girl

thanks Sue keep your chin up and I’m sure you’ll be fine. I’m so glad your mother is at peace now take care ❤️❤️xx

BrianTheElder profile image
BrianTheElder in reply to Soul-girl

Ye, that seems to be true, I am just trying to find my way. Thanks for the advice.

superdad1Q profile image
superdad1Q

yes i am a psp sufferer and i have leg problems it all started about a year ago when i was diagnosed with it and to be honest i cant walk at all now .. with the occasional maybe take my tea into the room without spilling a drop the rest of the time i am sitting down as when i do try to walk my brain actually forgets how to put one foot in front of the other and i fall forwards! ...my knees are bloodied beyond description say no more

BrianTheElder profile image
BrianTheElder in reply to superdad1Q

Sorry to hear that, but thanks for sharing. I started about a year ago, but I have never fallen backwards, and hardly ever forward, just occasional stumbles and very slow walking.

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