No diagnosis yet. Possible PSP

[sennen7]

Hi. My mum is showing signs of possible PSP but the doctors are not sure if it is.

MRI and CAT scans clear. Symptoms are : slow speech and trouble finding words (only at times). Slightly unsteady on feet (had a few falls, one in which she broke her neck!) Eye lids seem to have been affected. No other symptoms really. Slightly forgetful but not excessively for age.

She's not herself basically, but is totally aware of what's going on. She is a young 67. Has retired fairly recently from a very demanding job. Docs have ruled out Parkinsons I think. PSP has been referenced but no suggestions it is as such. Docs said it was a very interesting case apparently. (quite horrible to hear them say it like that) .

Anyone else going through this? Has anyone had a PSP diagnosis but found out it was incorrect?

Finding this so difficult to deal with.

Jan

[Kevin_1]

Hi Jan

Sorry to hear your news.

If you are in the UK:

Are you seeing the local Neurology Team?

If so ask for a referral to tertiary care.

In the UK the local Neurology service is generalist. Complex cases should be booted up a level to tertiary.

It is your right to have this. Esp. as they are unsure of the diagnosis.

Hope this helps.

Don't wait until the next appointment. Telephone in and ask to speak to the consultant... don't take a no or be fobbed off with someone else. They will have to speak to him second hand). Ask him, he or she will not mind.

I peak with many years working in the NHS.

Best

Kevin

[sennen7 in reply to Kevin_1]

Thank you so much Kevin. I am going to do this asap. Really appreciate you letting me know.

[SuzeW]

Hi Jan - so sorry you're going through this.

The short answer is 'yes'. Pretty much everyone on the site has found difficulties getting diagnosis i think.

I think my mums diagnosis was eventually via a PET scan (very specialist I think) which show protein on brain. But that was after years of blaming heart / blood pressure etc etc

The good news with your doctor is that at least he's interested (even if it feels a bit morbid) plenty of them couldn't give a hoot & are not in the least interested.

Keep in touch. Let's hope it's not psp for all of your sakes - but if it is - we're all here for you

X

[sennen7 in reply to SuzeW]

Thank you Suze. Do you think I could request a PET scan? I have a feeling she has already had this actually. I said cat scan but I think it was a PET scan. I will find out. I guess the problem with scans is just because something doesn't show at that particular time it doesn't mean it isn't developing. Wish there was a definate pattern we could all refer to (ie falling first, speech second etcc)

[SuzeW in reply to sennen7]

Hi - I know mums neurologist sent her to see a professor who did the pet scan in Southampton? He also said that no scan is 100% with psp....but that he was 99% sure it was that. I definitely think you could ask about a pet scan if you're mums not had one. The only good news with psp is this....as there's no cure an 'immediate diagnosis isn't urgent. I remember when mum was diagnosed being relived that it want something that we'd missed - that she could have had years of treatment for! It is of course a very very small concillation. Good luck X

[sennen7 in reply to SuzeW]

Hi Suze. I've just checked. Mum had a DaTSCAN and this showed no dopermine loss. Is this different to a PET scan?

[SuzeW in reply to sennen7]

Think so....."A positron emission tomography (PET) scan is an imaging test that allows your doctor to check for diseases in your body. The scan uses a special dye that has radioactive tracers. These tracers are injected into a vein in your arm. Your organs and tissues then absorb the tracer"

Ive copied that....don't panic!

[sennen7 in reply to SuzeW]

Thank you. All this info is so helpful.

[Finoni in reply to sennen7]

The Datscan is specific for detecting Parkinson's I believe. So there is some positive effect for PSP, but not exactly. My husband's first clue (besides micrographia, falls, changes in little things like leaving lights on) was the inability of his eyes to converge. He couldn't read for more than a couple of hours a day. That is quite an easy thing for you to check, I think. He was diagnosed at 68, but as with most, hindsight would add a few years.

Almost any diagnosis would be better than this one I'm sorry to say

Finoni

[sennen7 in reply to Finoni]

Thank you Finoni

I will check her eyes. Seeing her this weekend. Thanks again. So great to have all this knowledge from people on here.

[Hidden]

Falling backwards was one of key diagnosis for my husband and eye unable to look down. Good neurologist is key.

Good luck and truly hope it's not PSP

[sammy90210 in reply to Hidden]

yes, these 2 things are an indication of PSP, from what I know

[sennen7 in reply to Hidden]

Thank you for that. All useful info to look into. I haven't actually seen mum fall and at the moment she can look down but there are changes to the eye movements I'd say. When you 'can't look down' do you mean that he literally couldn't do it at all and so had to move his head down to see?

[Robbo1 in reply to sennen7]

I think you would benefit from looking at the online PSP Association website as it has the stages of PSP there. Also NHS Direct or the Mayo Clinic sites. Just Google them and enter PSP. Good luck. X

[Melhukin]

Hi

Sorry to read your comments.

At first doctors thought my dad had the start of motor neurone disease due to non movement in his left arm. Two years later he stayed in hospital for a week of tests. It did take a numer of years to be actually diagnosed with PSP.

Good luck x

[sennen7 in reply to Melhukin]

Thank you Melhukin. Will bare this in mind.

[sammy90210]

Hi - please also ask the doctors if it could be NPH (webmd.com/brain/normal-pres... - sometimes NPH is misdiagnosed as dementia (PSP is a form of dementia)

Unfortunately, the only way to confirm is to undergo a painful lumbar puncture (webmd.com/brain/lumbar-punc...

The good thing is that if it really is NPH, then the patient can undergo surgery and go back to almost perfect mental health - the bad thing is that if it really is PSP (or a related form of dementia), it will make the condition worse - so please be very careful

[sennen7 in reply to sammy90210]

Thank you Sammy. I will definately look into this! Won't get my hopes up too high though.

[Hidden]

Hello - I haven't posted here before, but you are describing symptoms that my partner has had for the last few years. We live in New Zealand, and we thought the odd symptoms - especially slowness of speech, general deterioration of language, and a few motor issues, were evidence of post-traumatic stress after living through a series of severe earthquakes a few years ago, but it turns out not. She was diagnosed with a kind of neurological degeneration called Primary Progressive Aphasia in May 2016, and this has recently been "upgraded" to Corticobasal Degeneration - CBD. If your mother has motor issues with one arm/hand - it could be this. My partner is 69, and this has been coming on for about 4 years - she is a retired academic.

[sennen7 in reply to Hidden]

Hi Yzzie

Thank you for your post. I'm sorry to hear that you and your partner are going through this. Has she deteriorated quickly or slowly? You say 4 years but have the changes been dramatic? Can she walk etc.

What is the prognosis?

Mum doesn't seem to have one side only affected but I guess it could develop like that. Who knows.

[Hidden in reply to sennen7]

Hello again - it was slow at the beginning, just the slowness of language really. Then about two years ago she began to have trouble using her right hand to write. Next she suddenly couldn't work out how to put her golf trolley up and down, though she'd been using it for years. It hovered around like this for a couple of years - but we were putting it down to PTS (the earthquakes). But it was going on too long, so we paid for an assessment from a neurologist. Had an MRI scan too, but that didn't show up anything.

She was still 'getting on' driving, cooking reading, gardening. Then we had the neurologist's report that contained a lot of 'possibly this and possibly that' - but basically said it was not PTS but neurological degeneration.

Next we got into 'the system', batteries of tests etc... long story short.. ie the diagnosis I put in my previous post. Less than one year later she is unable to drive, cook, garden.She 'reads' audio ebooks. Her gait is a bit odd, but she is still fit and healthy and goes for walks. She is fully cognisant of what is happening to her, and understands everything she hears and reads. She has a few months of railing against the universe, but we are in a calm phase at the moment. It's hard to have a proper conversation with her any more. But she's still "there". I don't really think about what might happen - I have discovered that one day at a time is the best, if rather cliched, approach. We have a strong network of friends who are supporting us, and I am able to work at home a lot (I still work full time).

[sennen7 in reply to Hidden]

Thank you Yzzie

I think my mum's symptoms look very similar. I would guess it's probably the same if not a varient of what your partner has. It seems there are a real range, mix and crossover of Parkinsons plus types.

I agree with one day at a time and trying to maintain a positive outlook. You really never know - they may find something that slows the development.

Thank you for your time. You have really helped. All the best.

[easterncedar in reply to sennen7]

Just to underscore what's been said already, as there is no treatment for psp, it's more important to rule out things that CAN be treated than to confirm psp at this point. Good luck. Easterncedar

[sennen7 in reply to easterncedar]

Thank you. Yes absolutely, I will take that on board.

[pzagy in reply to Hidden]

Hi Yzzie

I am sorry to hear about your partner, my mother in law also has CBD, diagnosed last year but I think present for about 5 years. Form what you have posted your partner is still in good shape, she is able to walk and communicate.

You are right to think about today but you also have to be ready for tomorrow.

My cousin in coming to New Zealand this weekend for a vacation, renting a motorhome and crusing around...you live in a beautiful place

Hugs

Paola

[pzagy]

Hi Jan

When we admitted my mother in law into the home (8 months after diagnosis of CBD) I met with the doctor and let him know she had CBD, he knew the disease well. He asked her to look at his finger and and moved her head back and forth, she could not keep her eyes on his finger. Simple check, if she is falling backwards without warning, if her feet seem stuck to the ground when she tries to walk. With CBD there is also a loss in facial movements, smiling and frowning are not possible. That for me was the tell tale sign that something was wrong.

[sennen7]

Thank you. This sounds like something to measure against. I will give it a go and see how she does. All the best.

[HoosierLinda]

I just read through th posts (8 months old). Helpful to know what to expect at my first appointment with movement disorder specialist in January.

Linda