My mum died of PSP and im scared i have it... - PSP Association

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My mum died of PSP and im scared i have it too!

AlliP
AlliP

I lost my mum 10 years ago to Psp. and i have been ill this last year, balance issues, memory problems , blurry eyes , extreme neck and spine pain , great difficulty moving my head! Im 54 , i get confused and forget things too! And yes im scared! Been having tests, nothing has been found. Im waiting to see a neurologist , i have had a brain scan and nothing was found, just wandering if PSP is visible on a brain scan? i think not? Any advice would be very much appreciated

17 Replies
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Hi AlliP

I am so sorry you are having health difficulties.

PSP and CBD are not inherited. There was one small study that thought it identified 'clusters' of families who had a higher than the normal rate of this group of illnesses. However even their study showed that it was exceptionally rare and it was a pilot study with all of the inherent accureacy issues which such small studies suffer.

The research is very clear, It is not an inherritted condition.

Sorry to bang on about studies. What I am trying to say is that it is like getting hit by lightening twice.

You might have an illness and you need to get that checked out.

My memory is not what it is worth. I forget the most obvious things sometimes. But that is par for my age.

Please get checked out.

Best to you

Kevin

AlliP
AlliP in reply to Kevin_1

Thank you Kevin i appreciate your reply! My mums death scarred me!

Such a horrible illness, Took everything from her!

Kevin_1
Kevin_1 in reply to AlliP

Hi

Yes, that is the horrid part, watching the one you love loose abilities little by little.

Wishing you the best.

Warmly

Kevin

AlliP
AlliP in reply to Kevin_1

Thank you Kevin

MRI of the brain revealed atrophy of the midbrain tegmentum, with a relatively preserved pons; this gave an appearance resembling the head and body, respectively, of a hummingbird. This is known as the ‘hummingbird’ sign. If your scan doesn’t have this then you probably don’t have PSP.

AlliP
AlliP in reply to Jeff166

Thank you Jeff i appreciate your reply.

Kind regards

Everything I have read never has shown that these diseases are hereditary. I sympathize with you greatly over the issues you are having but PSP isn't the thing I'd jump to. Even doctors have a difficult time making a Dx of PSP. Hopefully something will be found to explain what is going on.

Ron

My husband was Dx’d with PSP over a year ago. His uncle on his mother’s side died from PSP in 2006 (we recently learned), and we believe that my husband’s mother also suffers from this disease, but her husband is too cheap to take her to a neurologist for a diagnosis. She had many of the symptoms (falling, vision problems, balance and cognitive issues) back in 2006-2008, has been in a wheelchair for the last five or so years, and has been in a nursing facility for the last nine months or so.

The one thing to remember is that these diseases can not be a 100% confirmed Dx without a brain autopsy. When a doctor tells a patient they have PSP, CBD, etc it is only his best educated guess off his or her's experience with the diseases.

Ron

There are ways a good neurologist can narrow in on a PSP diagnosis. Make sure they check your eye movement. This is a pretty accurate tell. Also, they can do a test where they pull you back while you're standing (they won't let you fall), just to check your balance. PSP often leads to backwards falling. My wife's first neurologist did not test these things, and she was misdiagnosed with PPA. A second neurologist did these tests (among others) and arrived at a diagnosis of PSP. I hope whatever you have is not a serious issue. Blessings and good luck.

JA10
JA10 in reply to Ben_Roberts

Those were the tests that my mum's neurologist used for diagnosis, when she was first diagnosed. I don't think she had had a brain scan then, she has since while helping with research and her humming bird is really clear now.

Hi AlliP,

As you have been reading, PSP is not known as a hereditary disease. There are several things that mimic PSP though. My Neurologist tested me for Vitamin B-1, Vitamin B-12, Vitamin E, and Copper deficiency first off. He also looked for several genetic diseases with their bio-markers. Though he didn't think any of those were the cause he wanted to rule them out. Lastly, along with an MRI, the pull test of backward falling and the vertical gaze issues, he performed a quick cognitive evaluation before the diagnosis.

Stress can cause memory problems! Please try not to let that worry you. I was almost convinced I was developing dementia during the worst of the last few years of my caregiving. I was also told that menopause can cause temporary memory problems and I do believe it compounded the issue. It all passed and and I'm as good or bad as I ever was - I think!

B12 deficiency can cause all of the symptoms you list, so definitely worth getting properly checked out for that first, before worrying. But I know how you feel - I lost my dad 18 months ago to PSP and convince myself most days I'm starting with the same symptoms that he did! If you're in the UK, the best way to get checked for B12 need is via multiple markers as the B12 serum test isn't reliable. Most doctors don't realise this, so it takes a bit of research first. I can pass on the info you need if you're interested, just give me a shout

Don't underestimate the impact that menopause can have on some people. And it can change over time and continue longer than you might expect. You could also try taking some multivitamin and mineral supplements for a while and see if that helps as others suggest.

I had an MRI scan on an experimental high powered 3T scanner which showed the chacteristic hummming bird feature at the top of the brain stem. This together with the clinical exam made for the diagnosis of PSP. I'm not sure if the noramal scanners can pick up the feature.

Differential daignosis of PSP vs PD and MSA is notoriously diffcult, I was fortuanate to be daignosed so quickly; many people are left undaignosed for years.

Sleep deprivation and stress create a huge impact on your health as well. Sometimes I mix up my words and I often forget what I was about to say in mid sentence. It’s easy to exaggerate and think the worst. Many times I’ve questioned if my husband’s illness is rubbing off on me. I try not to go down that rabbit hole. Do you feel better after a good nights sleep? I hope that you feel better soon.

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