Has anyone had any experience with a PSP diagnosis?

Posted by shelcran @shelcran, May 24 6:57am

After nearly 4 years of long covid symptoms, I was recently diagnosed with Progressive SupraNuclear Palsy. I'm in denial but wondering if anyone has had a similar diagnosis with positive treatment results? Not interested in taking a med that only covers up the symptoms or a trial/test run to determine what med might work. I currently am no longer driving and family pow wow said someone needs to be in the house with me (silly). Any suggestions?

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merrychristmas | @merrychristmas | May 25 7:37am

Have a PET scan

shelcran | @shelcran | May 25 4:12pm

I have had 6 brain scans with and without contrast. How would a PET Scan differ?

merrychristmas | @merrychristmas | May 26 7:42am

In reply to @shelcran "I have had 6 brain scans with and without contrast. How would a PET Scan differ?" + (show)

@shelcran what type brain scans ?

merrychristmas | @merrychristmas | May 26 8:22am

In reply to @shelcran "I have had 6 brain scans with and without contrast. How would a PET Scan differ?" + (show)

@shelcran
MRI determine brain atrophy
FDG Pet scans determine what areas of the brain is effected
***DaTscan —-single photon emission computed tomography or SPECT scans. To evaluate the dopamine . Abnormal DaT results helps differentiate PSP . R/o Parkinson’s
Look up “ Cure PSP”
PSP falls under the umbrella of FTD

shelcran | @shelcran | May 27 11:09am

In reply to @merrychristmas "@shelcran what type brain scans ?" + (show)

@merrychristmas
spec scans and Amyloid scan...others were reg. MRI's of brain

cartercd | @cartercd | Jun 1 9:15am

I have recently been dx w PSP, same as you . No longer diving as of couple weeks . Ago. I am preparing to die, Husband just bought new car for me. Now cant drive. Depressed-yes loss of independence—definitely YES
What more is there? No cure, no treatment

merrychristmas | @merrychristmas | Jun 2 6:30am

In reply to @cartercd "I have recently been dx w PSP, same as you . No longer diving as of..." + (show)

@ cartercd google “ CurePSP. They wonderful education

shelcran | @shelcran | Jun 2 7:53am

In reply to @merrychristmas "@ cartercd google “ CurePSP. They wonderful education" + (show)

@merrychristmas Cure PSP is like one stop shopping..the sight offers plenty of excellent information. Thanks for sharing this site.

shelcran | @shelcran | Jun 2 7:54am

In reply to @cartercd "I have recently been dx w PSP, same as you . No longer diving as of..." + (show)

@cartercd: other than not driving (which does take away a ton of independence) do you have a home care person/companion to be with you when family are gone?