wrong diagnosis????

[kay1]

Although Frank has speech problems and lost the use of his legs, his upper body strength seems to be stronger, he has a great appetite, and sleeps well. The speech problem doesn't stop him talking at all - he always has been a chatterbox. He was diagnosed in 2008, he is 89, is it possible that he has been misdiagnosed or are we one of the lucky few not hit so bad by the disease? Speech therapist saw him today and said there are no feeding or drinking problems with him.

[ray-wiffen-1958]

hi kay,

hope your keeping well i also wonder if ive got the wrong

diagnosis because when i see the neurolergist a while back

he couldent belive that in the last year that i hadnt got any

worse in fact some bits had improved i two have speech problems

and nearly lost the use of my right arm i have cbd not psp but i

think a lot of it is down to what state of mind your in, i eat well but

sleep very badly i was 49 when i was diagnosed in 2007-2008 i dont

think any two people with psp/cbd have the same symptoms or progression

in the journey through this disease, so i think diagnosis of both psp/cbd

is hit and miss so i tend not to think about it and take each day as it

comes and get on with my life as best as i can you never know whats

round the corner,

ray

[kay1]

Thank you Ray - you speak wisely, I must take each day as it comes and just be glad that Frank is in "good Health" it certainly wouldn't change anything if they came up with another name!! Glad you helped me.

x

[dorothy-thompson]

dorothy-thompson

Hi Kay,

I think Ray is right, my husband has psp, it was diagnosed last year but looking back I can see that it has been coming on for nearly 6 years. Each person's "progression" through the condition varies, their symptoms do not show all at once. So as you say, take each day as it comes and remember tomorrow is always another day.

take care

dorothy-thompson

[kay1]

Thank you Dorothy x

[MJ-Mark]

hi

My Dad has been sick for about 8 years and was diagnosed 6 months ago by a second neurologist. Previous to that, he was diagnosed with Primary Progressive Aphasia. Basically identical symptoms, except the eye movement problems....that is how they knew it was PSP.

Take care!

[kay1]

So many diverse symptoms, just as we get used to he situation another change develops, I have tried the eye movements with him and there is no reaction, so OK PSP, I accept this is what we are living with.

[maggieh]

Hello Kay

Not sure what you mean when you say - "I have tried the eye movements with him and there is no reaction, so OK PSP, I accept this is what we are living with" - Do you mean Frank HAS the eye symptoms that are usually seen in PSP? I think I am correct in saying, this is one of the main signs that differentiate the illness from others. My husband was first told for instance, that he had Parkinson's Disease in 2004/5. I seem to recall he was then having mysterious falls backwards, his judgement was impaired, he had less energy and his personality was changing - no tremors. As things got worse and the falling backwards got more and more, he had difficulties with speech, problems with eyesight (new glasses didn't help and bright light bothered him) and he had occasional difficulty with swallowing. Sure he didn't have PD I asked our GP if we could see another neurologist. The new specialist did thorough tests and Parkinson's was finally discounted. We were told we were more than likely looking at PSP. My husband would go months without any changes, and when they did occur they were very subtle in the beginning. He NEVER, ever improved. He would plateau for another few months, then like a staircase going down, he would slowly, decent a step at a time. With each year that passed it was noticeable how his abilities had got less and less, Sadly he died from PSP in April, this year.

As we have been saying, everyone IS different and no two people with PSP or CBD have the same symptoms and stages, so it might be worth asking for another opinion as Frank may have something else?

Best wishes,

Maggie

[jillannf6]

hi kay

i thinik i have yhee slow versiion of Psp as i can sitill do qiuite a bit

taking a day a t a ttime is important with some mini- plans for future days too!

i d not think a neur. would dignose PSP lightly

love jill

[kay1]

jillannf6

I think you are wonderful the way you cope, Frank has only seen the specialist twice, last time was in 2009 and we were just referred to family Dr. Perhaps Frank is the same as you, slow symptoms although his speech problems are getting worse, but he still chats away most of the visiting time!

x

[PSPA_JillL]

It can be difficult to diagnose these rare conditions, but you are right the eye symptoms, which are difficulty with eye movements and particularly the up and down gaze movements are a key sign in PSP. It may be useful to note down changes you are observing (or not observing)in a notepad for your next consultant visit it will be useful when you see them again.

It is rare but does occasionally happen that diagnosis is changed but the diagnosis is usually to one of the other similar progressive neurological conditions.

Its also difficult to monitor progression of the illness, as people have good days and bad days, but the riluzole trials that were undertaken a few years ago whilst not showing any marked improvement from the drug did help set out criteria and measurements to be used in future trials. There is some research that suggests there are different types within PSP and these have different rates of progression.

It is important to enjoy the good days, whilst being prepared for the not so good.

[jimandsharynp]

My first wife died of Cruetzfelt-Jacob disease which is similar to PSP but it moves MUCH quicker (months). They told me the only way to get a true diagnosis is to biopsy the brain. This is usually done after death for obvious reasons. I didn't opt to have it done once she passed on. I know one woman whose husband was diagnosed with PSP but the brain biopsy indicated CBD instead. Bottom line, every one of these diseases are similar in many ways but the result is the same so it really doesn't give any peace to know which it is.