DIAGNOSIS

[Cinjav]

I have had epil since age 29. Just happened all of a sudden, no reason. I’ve had many seizures and also was diagnosed with Major Neuro. cognitive disorder..

I knew there was something wrong with me. I started having double vision, my neurologist sent me. To Eye Institute and that was first when they suspected it, and sent me to have two MRIs. Two months later I go for a regular visit with my neurologist and he tells me have to start planning. He showed me the scans and said that I have PSP. I’m getting a second opinion on March 4. But, I’m almost positive I have it. I have many of the symptoms.

I have a very hard time sleeping these last 2 years. Many other symptoms. I think I might be mid stage early. Will I be ok for few years or does it come on fast?

My husband doesn’t like people knowing I’m sick, but most know. He takes care of all my medication and meals. He used to be a firefighter/paramedic.

[Bergenser]

I'm sorry to hear you have received this diagnosis. Please stay Positive, as there is a lot of scope to continue to enjoy life. It sounds like you have a husband who will care for you and fight for you. ,🌻🫂

[Zerachiel]

Hi, there is a wealth of information and help on CurePSP, they are US based psp.org/iwanttolearn/progre... my own research and my experience with my wife the 'stages' of PSP are a general guide but do not apply to everyone; some get later stage very early on and visa versa. The first things to affect my wife were eyes closing and speech problems.

Again with the speed of developing symptoms, some slowly get worse of many years where others have a year where the progression is very rapid, sometimes due to other illnesses, my wife stopped eating sold food after covid and lost her balance after pneumonia.

Sorry I can't offer anything more positive but have a read of some of the other posts on this site to understand other peoples journeys.

[OllieFisher1]

really sorry to hear that PSP is likely a reality for you not withstanding the 2nd opinion. My Dad has PSP and is in a resthome. He was diagnosed with parkinsons in 2019 which turned out to be PSP. He slowed down lots, but was still 100% independent until a fall in 2022 which was off a cliff face because he has only walked a few steps at a time since and with supervision only. He just skipped the walker, shower aids, can etc, and went to a care home, so in that sense it was really fast.

Your post resonates with me in particular because I have epilepsy with no known reason, and seeing my father now......it does get me thinking.