Confused

[-shelly26-]

My husband was taken by ambulance last week where he recovered from a ten hour "pseudo-seizure". It started with me wrestling to keep him from gouging and clawing his face and eyes. After an hour I called emergency services. He was admitted.

A psych was called who said he thought it was fictitious but could be dementia, which really upset me. And then yesterday I got a call from a research hospital that diagnosed him with dementia with minor psychological components. He shares so many symptoms of PSP but his MRI hasn't changed much, so they have had a tough time with diagnosing. I feel kind of lost as this diagnosis is vague and his symptoms don't match up with dementia's that I have read about. I know they considered LBD. Did any of you have these types of diagnosis before you figured out what it was?

[Dadshelper]

Sorry I have no info to offer on your situation. Dad was first Dx with Parkinson's but after no response to usual meds he was referred to a neuro movement specialist. That doc gave Dx of CBD.

Ron

[easterncedar]

Oh, Shelly, that sounds like a pure nightmare. I am sorry. I didn't experience anything like it - my guy had a very straightforward diagnosis of PSP, with moderate dementia, very early. I can see why it would be beyond upsetting to hear what you have gone through as being fictitious in any way! There are so many types of dementia, and even with a PSP, CBD or Lewy Body dementia diagnosis the symptoms vary greatly from patient to patient. What symptoms lead you to suspect PSP, if I may ask?

Best wishes, Easterncedar

[Boyce3600 in reply to easterncedar]

Was the straightforward diagnosis based on the butterfly seen on an MRI? What about the dementia diagnosis..was it from verbal testing or from an MRI? Are you in the USA?

[easterncedar in reply to Boyce3600]

I am in the US, Maine. The first neurologist, who retired shortly after we met with him, started out with a spinal tap to eliminate MS and syphilis as diagnoses. Post-Guillain-Barre, from a viral incident 30 years before, was a working hypothesis for about a year. The initial diagnosis was made by a young, aware, neurologist, the second we saw, based primarily on his strange gait and his tendency to fall backwards. She didn't cite the MRI as definitive at that point. After that first mention of PSP we went to a neurologist who specializes in PSP at the Lahey Clinic near Boston. She confirmed based on the hummingbird shadow on the MRI (which was a very newly identified signifier at that time) and his gait. The dementia diagnosis was based on oral memory tests she gave. We didn't do the major testing, three hours of it, for that as she recommended, as there seemed nothing but trauma in it for him. It would have let us track his deterioration, but would not have affected his treatment.

She had him take large amounts of CoQ10, and had him try all the various drugs to address the symptoms as they arose - sinemet, L-Dopa - I can't remember them all. Nothing helped. The prism lenses didn't help his vision, which bothered him greatly.

He drove and kept working for a few years post-diagnosis. He died last year about 11 years after the foot dragging first appeared.

[-shelly26- in reply to easterncedar]

It started 3 and a half years ago with subtle mood changes and he started tripping for no reason then falling like a log backwards. It progressed quickly. His gait became sloppy like a drunk man and then he couldn't walk at all without help. He frequently bursts into tears while watching singing shows or whatever, or bursts into laughter for no reason, ataxia makes it difficult to sit in a wheelchair. He tips forward or sideways. When assisting him(walking) to the bathroom, his tips his head back and watches the ceiling and I can't keep him up. He has lost his ability to speak, his eyes have stopped tracking, he can't remember how to swallow sometimes and water runs right out of his mouth or else he dumps the whole glass or bottle all over himself.

The doctor at the University Hospital wrote that it could be PSP with a baseline and minor psychological components but needed further scans to be sure

[-shelly26- in reply to -shelly26-]

And then after his hospitalization and because I have zero help for him and am having a lot of difficulty, they diagnosed him with dementia. He really can't remember who I am sometimes. He gets very confused. The list goes on but it's been a mystery. We have been to Mayo, and OHSU several times and seen lots of doctors in differing specialties. Even an ear nose and throat doctor to check for inner ear problems because of his ongoing vertigo. Anyway, I just have no support group to go to and had found some commonalities on here with some.

[-shelly26- in reply to -shelly26-]

Oh that sounds quite straightforward but what an awful road. That's a really long time. I am sorry for your loss.

We are in Oregon but lived in upstate NY for several years, where he worked in natural gas and then northern Alaska for the same career. But he was 35 when this started and he began having what we considered seizures, in January after onset, which it appears is a psychological component. His MRI is always normal, with no hummingbird but I chatted with another woman on here a few months back whose husband didn't show anything on MRI but it was confirmed PSP at autopsy.

[tlovins]

When my dad first started with noticeable symptoms my google research led me to Lewy Body (forgetfullness, cognitive decline, slurred speech, appeared drunk/unsteady gait) Within a year of my initial thoughts of LBD, Dr. said stroke was to blame. 2.5 years later neuro diagnosed PSP. Neuro said primary symptom that led to PSP was the fixed upward gaze. Once we learned the rest of the symptoms, we were 100% convinced Neuro is right.

[-shelly26- in reply to tlovins]

So sad. I am sorry to hear it.

[-shelly26- in reply to -shelly26-]

My husband started having garbled speech after a few months. He sounded like that Muppet from "The Muppet Show" the Swedish chef. But that stopped a year later when they put him on something for focal seizures.

[tlovins in reply to -shelly26-]

I can’t imagine how frustrating this must be. As evil as PSP is, I remember feeling somewhat relieved at least knowing what the diagnosis is. Best wishes!

[Boyce3600]

Let me start again my first comment was erased:

did anything help the fixed upward gaze

were there any eye exercises

did it change at any time

could he ever look down or side-to-side

how did this affect his eating

[-shelly26-]

I am curious about the eye thing as well. My husband can't write anymore. He can't remember how and when they tried the testing flashcards he couldn't identify them because the muscles around his eyes began to spasm terribly when he was attempting to concentrate. He has a lot of "pressure" in his head and eyes. They wondered if it was encephalitis of some sort and wanted to do another spinal tap but his local doctor's have dismissed that notion

[-shelly26-]

It's so hard to know what to expect and so like a psych to think he knows it all with one ten minute visit. Yes, it's hard to diagnose, and yes, he hated his job but he has never had problems working. He was actually working 80 to 100 hours a week. And was very strong, positive, adventurous, and a great dad.

And a sudden onset of sleep apnea, waking up 68 times in an hour, also began at the onset of whatever this is. And a skin lesions which were cleared after treatment for Lymes disease and toxic mold exposure and heavy pesticide exposure.

[-shelly26-]

I just don't know what to expect next because dementia isn't a perfect fit. He has a bit of every dementia stage.

[raincitygirl]

I'm so sorry I don't have relatable information to share Shelly My hubby (CBD) had progressive cognitive decline but kept his "rationality". I guess we know that whether it's PSP, LBD, or something blended, there isn't a true treatment for any of them - it's a matter of caring for him through it. Do you have any home support or day care respite or anything there?

Sending you hugs XXX

Anne G.

[-shelly26- in reply to raincitygirl]

Not yet but a home health nurse is supposedly coming today to do a needs assessment. She hasn't called me so I can't be sure she is actually coming. The hospital visit really kicked things into gear, as awful as it was.

[raincitygirl in reply to -shelly26-]

Will keep my fingers crossed for you!

XXX Anne G.