This makes sense: Hi, just joined the forum... - PSP Association

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This makes sense

Bimble0n profile image
11 Replies

Hi, just joined the forum because I’ve been researching my symptoms. A daft thing to do perhaps but reading some of your comments has meant that I’ve recognised several things that have been happening to me.

I’ve had a number of instances where I feel like I’m about to fall backwards. All of my weight seems to be on my heels and I’m unable to correct it. I haven’t fallen yet but it lasts for a few seconds. I’m not dizzy at all.

Reading symptoms it fits that I have a real issue sleeping. Very broken and average under 4 hours a night. I’m told that I seem unhappy, even miserable, but don’t feel it. Although I know that the smallest things annoy me now. I like everything in its place and tend to grumble when the rest of the family create a mess and don’t clear up. I generally put that down to be a fastidious old veteran (51). Perhaps there’s more to it?

It’s the balance thing that is troubling me. Does or has anyone had the same as I describe or is the general balance issue more pronounced for most people?

I should say that I’ve not spoken to a doctor about this but I will arrange to.

Thanks for listening

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Bimble0n profile image
Bimble0n
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11 Replies
honjen43 profile image
honjen43

Welcome BimbleOn! You sound like me! You look for possible scenarios so that you can prepare for them - without getting too paranoid!

That being said, go see a doctor about your balance. It could simply be an inner ear problem, or something simply fixed.

PSP is not something you want to wish on yourself! I hope you don't "belong here" on this PSP site, but we can help you should you need to return! Talk to the Care Community too!

It would also help to know a little more about you, male/female, country you live in.

Sleep problems I find are a problem with most of my female friends! Has to be a hormonal thing, I think!

Meanwhile, stay proactive, and keep moving. It does help to keep stiffness at bay as you get older. I am 75 and have to persuade my body to do things it is not so keen to do, but find persistence helps! Be the Boss!

I wish you some simple solutions!

Hugs

Jen xxx

Bimble0n profile image
Bimble0n in reply to honjen43

Hi Jen. Thanks for replying. I’m a 51 yr old male in UK. Definitely would rather have a very simple resolution without a diagnosis of PSP. Have made a request for a GP appointment.

Katiebow profile image
Katiebow in reply to Bimble0n

My husband had loads of tests (before diagnosis) for possible causes for balance issues. He saw Ear/Nose And Throat specialists, had brain scans was given excercise regimes etc etc. Because the GP wasn't familiar with PSP he didn't recognise the telltale symptoms, i.e. Staring gaze, along with awkward gait, falling backwards, slowing of thoughts and in his case signs of depression. He wasn't referred to a neurologist until a nurse friend of mine suggested that it might be a good idea and upon our request to the GP he was sent to see a neurologist who immediately suspected PSP. It didnt really make any difference as PSP can't be treated but the neurologist ran lots of blood tests to rule out other potential causes ( about 8 different tests I recall) it would have saved a lot of stress had he seen the neurologist earlier as the excecise regime he was asked to do was totally inappropriate for him and actually quite dangerous in hindsite. Hope that helps

Love Kate xx

Dadshelper profile image
Dadshelper

Welcome to the site. You say there have been instances where you feel off balance like you may fall backwards. The things I've read about PSP is people normally don't have a pre-indication of falling backwards, they just fall.

I would definitely schedule a doctor appt asap to see if there are any issues that may be causing your symptoms.

Ron

Bimble0n profile image
Bimble0n in reply to Dadshelper

Hi. Thanks for commenting. Thankfully I’ve managed to grab ahold of something to prevent me falling each time so far or fallen back against a wall on one occasion and slid up against a wardrobe.

Have reported my symptoms to my GP online tonight and should get a follow up in 48 hours. They offer a great service. Had 2 major bowel surgeries in the last 18 months and they’ve taken great care of me. Luckily it’s not a major battle to obtain advice.

racinlady profile image
racinlady in reply to Bimble0n

When you say you are able to catch yourself before you fall, that doesn't sound like PSP. One of the early symptoms of PSP is very slow movement. I don't think most people with PSP can catch themselves. My husband usually just toppled over. He developed a forward lean to compensate for falling backwards. I hope you are able to pinpoint what your problem is, but it doesn't sound like PSP to me.

Good luck in finding a diagnosis for your problem. I hope for your sake that it is something more treatable than PSP.

Karynleitner profile image
Karynleitner

Please keep us informed . Best of luck to you.

There isn’t a test for PSP. Start with your GP then a neurologist. Hopefully it is something else and easy to fix.

sasmock profile image
sasmock

Hi, it's definitely worth getting your B12 levels checked out properly, as balance can be badly affected by low B12. The anaesthetic used for surgery depletes B12 too, so may be more relevant for you. Not sure if you're in UK, but the trouble with the NHS B12 test is that it's not very reliable. They only measure total serum B12, and to get an accurate assessment you need active B12 and urinary methylmalonic acid (mma). Both of these can be ordered privately. But first action should be your gp, see what they are prepared to investigate. At least if their b12 comes back borderline or low/normal, you might then go on to get more thoroughly checked out, to at least eliminate that as a cause of your balance issues. You can have normal total serum B12, but still have a raging deficiency of active, and this affects the nervous system

Birdman34265 profile image
Birdman34265

Hi, falling backwards without warning and loss of brain function ,and the way our neurologist diagnosed my Kathy is loss of eye movement, looking left and right only,the symptoms may not follow the same from person to another,i would check with a doctor if you get worse, good luck .Peter

Bereaved2017 profile image
Bereaved2017

Birdman's response reminded me... my Dad's first symptom (as with many or most PSP victims...) was blurry vision. He was misdiagnosed for a couple years as having Parkinson's. The way they finally got the correct dx and differentiated between Psp and Parkinson's, was a simple vision test that USUALLY applies to PSP patients. That is, they can not look upwards without tilting their head upwards. They can look side to side and down without moving their head, in beginning stages of psp, but they can not look up. I'm in agreement with the other replies, I doubt your issue is psp, thankfully. Please let us know what you find out.

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