Expecting the Worst. : I am coming up to... - PSP Association

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Expecting the Worst.

billymakeover profile image
22 Replies

I am coming up to 75years of age and a single father of two grown sons,in their late 20,s,still at home. I have had a balance issue for about 10 years,and following many tests including mri,s,nothing has been found. Over recent years my sight has deteriorated, with double vision and blurred, also my knees appear to have a tingling sensation. Walking has become difficult and very recently my jaw has been stiffening up,although my swallowing is ok. I have not been diagnosed with psp, but fear the worst. Now you may be surprised to know,i have kept fit all my life, with running and tennis (only gave up 15 months ago, due to movements on court). Now running still plays a big part in my life and i manage to complete 6 x 150 yds every other day (sprints) and i feel much better for it. Given all this info. would psp be likely and where could i get confirmation ? I would welcome any comments and suggestions..... Thanks Paul

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billymakeover profile image
billymakeover
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22 Replies

Have you seen a movement disorder neurologist? It’s a specialist in neurology dealing with PSP, CBD, MSA, Lewy Body disease and other neurological problems. If you think you might have PSP this would be the type of doctor to see.

You may or may not have some sort of neurological disease or condition.

If you had PSP an MRI would show a hummingbird configuration in your brain that is a tell tale sign.

Doublereeder profile image
Doublereeder in reply to

Hi Jeff, does the hummingbird show up on an MRI or only confirmed on autopsy?

in reply toDoublereeder

In the MRI. The autopsy would confirm PSP if that is what the brain has had. A number of autopsies show what was thought to be PSP was in fact Lewy bodies or CBD or something else. The symptoms can overlap. The only thing neurologists go on is the symptoms presented. Their diagnosis can be wrong.

racinlady profile image
racinlady in reply to

One added note. The hummingbird didn't show up on my husband's one and only MRI. However, PSP was confirmed on autopsy. So it won't always show up.

Pat

ConcernedEx profile image
ConcernedEx in reply toracinlady

Better he didn’t know he had psp- it’s agony to watch someone know each day they wake up and they will be worse than day before. Gutwrenching

Doublereeder profile image
Doublereeder

Hi Billy,

Sorry to hear of all your difficulties, so many frustrating things happening beyond your control, it's a frightening time. I wouldn't begin to comment on any likelihood of PSP, we're not qualfied. You do need to go to your GP and ask for a referral to a neurologist and, as Jeff says, ideally a movement disorder one. Bring your concerns to them. Good luck!

billymakeover profile image
billymakeover in reply toDoublereeder

I have a further appointment at the end of August,will be mentioning a movement disorder. Thanks for your concerns

ConcernedEx profile image
ConcernedEx in reply tobillymakeover

Bring someone to your appointment with you. Just so you don’t miss anything the doctor says. You sound good and my prayers are with you. Can’t you get earlier appt?

Drjazz profile image
Drjazz in reply toConcernedEx

My neurologists likes having my wife at offices visits, so he can get her impressions as a check on mine. She likes to go, because she's afraid I won't tell the Dr. the whole truth about how I'm doing. Billy should take one of his sons, since they live with him.

billymakeover profile image
billymakeover in reply toConcernedEx

Thanks a million for your concerns and possible way forward

It took mom many years & numerous doctors & test before she was diagnosed with PSP. We found the best thing to do was deal with each issue as it came up the best we could. Making your home safe would be my first suggestions. Hopefully your sons live close & you feel comfortable sharing your thoughts with them. Researching older post on this site can be helpful as you search for answers. Sending hugs of understanding... Granni B

billymakeover profile image
billymakeover

Thanks Granni B, have taken on board your comments and understanding

ConcernedEx profile image
ConcernedEx

You need to see a movement doctor/neurological examination needs to be done

Kudos for your Heath regiment but don’t turn a blind eye to your deteriorating factors

ConcernedEx profile image
ConcernedEx

Don’t be scared- knowledge is power

Drjazz profile image
Drjazz

There are so many neuro-degenerative conditions. Don't automatically suspect the worse ones.

Also, at 75, you need to realize that old age always has its problems. It sounds like you are still basically pretty healthy.

billymakeover profile image
billymakeover in reply toDrjazz

Thanks for possible reassurance, you have made me feel more confident

Sunsetboulevard profile image
Sunsetboulevard

One of the big indicators is an inability to keep your eyes open and being unable track with your eyes ... up, down, side to side

billymakeover profile image
billymakeover in reply toSunsetboulevard

Thank you for your comments, eyes at present seem ok, although very blurry and double vision.

ConcernedEx profile image
ConcernedEx

It’s so hard not to automatically think the worst. But try to wait for a diagnosis before worrying.

They’re right, so many neurological issues with overlapping symptoms.

I’ll pray for you and your loved one.

billymakeover profile image
billymakeover in reply toConcernedEx

So good to have people like you. God Bless and thank you

ConcernedEx profile image
ConcernedEx

God Bless you. It’s so tough, just an emotional roll-a-coaster, buckle up.....you have this (and you’re never alone).

ConcernedEx profile image
ConcernedEx

...and I’ve come to accept that it’s ok to feel “sometimes” negative...... but don’t let negative go too long because that brings a whole lot of emotions no one needs!

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