Hi all
We went to see the neurologist on Saturday and after talking for a while I asked him if Archie had vascular dementia which was diagnosed late 2014
He said definitely not so told him to take it off his records
Then the big question I had was about PSP and said he had it cause everything about him and what he has goes with the illness BUT he puts it down as probable because it would mean a biopsy and they don't do that
Has anybody else had this or what be nice to know
Sue xx
Yes. I have heard that the only accurate diagnosis is examining the brain. So obviously after death !
Jean xx
Hi Sue
I do hope this is of value to you - almost didn't write it.
Sit down and here you go... this is just my take... so keep a pinch of salt in your hand.
Your car won't start. You call someone and they fiddle under the bonnet and eventually say your battery is flat. They might do more tests and say , "it just needs charging."
So you have symptom + expert ---> Diagnosis ---> Diagnosis determines treatment.
Medicine is not so simple and does not always work like that.
The diagnosis is often also about putting that person in a diagnostic box. It does enable the doctor to narrow the treatment options, but a good doctor also keeps their eye out for other symptoms. Perhaps co-morbidity. (two illnesses at the same time).
However that diagnostic box is also a research box. As illnesses are more understood then it might be found that what was one box should be two or three or more. By carefully defining an illness and putting a label on it the research folk have a platform on which t work.
Enter the ICD 10 (Tenth edition) (International Criteria for Diagnosis) This is the tool that doctors use to diagnose an illness including PSP. It means doctors world wide (except the U.S. who have their own system - I think) all diagnose to the same standard.
In order to give the diagnosis for PSP the person must meet the basic criteria.
Here they are:
icd10data.com/ICD10CM/Codes...
Now a neurologist will do many confirming tests not in the ICD10 - A CTC scan is a very important test.
I would hate to call a neurologist a smart arse. But to fall back on a biopsy of the brain seems to get very close to that in my book.
I would talk scans with them. If it helps that is what the UCLH do and they have a world leading department in this.
Sighing.
I do hope this helps a little.
But I doubt a more precise diagnosis will be of help. Doctors do like the word 'probable' as it signals others to keep their eyes open to other issues. There I am being kind!
Kevin
xx
This post is dedicated to the wonderful and wise Strelly. A PSP sufferer who posted a lot on technical issues here and was oh, so precious to us. A warm and wise man.
Hi Kevin
Thank you I will take a look
Hope all is well for Liz and yourself
Sue xx
Update:
These links are probably more useful.
Just click the obvious links to move through the the articles.
psp.org/new-criteria-psp-di...
neuro.it/documents/material...
Waiving
Kevin
My husband was only dx with PSP after four years of symptoms. His MRI showed a hummingbird shape at the base of his brain. His neurologist said that only appears on PSP patients.
That is exactly what we were told too. The hummingbird shape predicts psp in patients when the MRI is done.
Your great..., Brenda..x
Our neurologist said she was very sure, based on his symptoms and an MRI, but that absolute certainty was not something that anyone could provide. She said she generally only offered psp as a "probable" diagnosis, but my guy was basically textbook. We never doubted her.
There would have been no different outcome whatever the diagnosis - there's no treatment for any of this.
My mum was also diagnosed initially with vascular dementia and Parkinsons, however as she progressed over the years the Consultant was sure that she has PSP. The vascular dementia diagnosis came from the CT scan after numerous falls. The lack of movement of the eyes and the other symptoms confirmed it. The diagnosis has not helped in anyway because there is no real treatment, only management of symptoms. I'm sure that I have had better advice and support from everyone on this site compared to the doctors. A label is important but in certain situations that's all it is a label xx
Sorry, not feeling great, Mum has deteriorated significantly again, feel helpless watching.
Hi am2015
Thanks for reply unfortunately I think we on this site know more than professionals sometimes I think they play dip dip do cause they don't know
Hope you feel better and your mum settled I know it's hard but try to be strong
Sue xx
Same here. Text book case when I knew about PSP. As there is so little known and no treatment I have always focused on dealing with the symptoms as they present. Its always a comfort that someone here has been through what you are going through and it passes. Sometimes gets worse mind !! But you are not alone and that was the main feeling I had at diagnosis.
love to all, Jean x
I'm not totally sure, but I believe the only way to be absolutely sure is postmortem biopsy....after patient is dead.... can they make a certain diagnosis. However when i told my husbands neurologist I thought it was PSP, he did a downward gaze test which B flunked and DR agreed w me.
Appreciate your comments on this string, Kevin.
Our specialist admitted there was some intuitive guesswork involved! He said that was why doctors worked in a "practice".
When we were looking for diagnosis for possible CBD/FTL, J had a brain MRI, which showed large blank spaces at the stage he was at at Xmas 15, then a lumbar puncture was suggested June 16 since they wanted to research some elements in the spinal fluid. This wasn't done since the spine was not in good shape and neither was my love!
Because J had obvious symptoms of Parkinson's, the ward doctor in charge, insisted that was the diagnosis. Since everything else was not confirmed that is what appears on the death certificate, even tho J's passage through did not fit!!
I believed the neurologist as his diagnostic idea fitted what I had seen happening to my love. I was certain that J had gone far beyond symptoms of advanced Parkinson's. The neurologist had interest in delving deeper into diseases of the brain, - far more than the ward doctor who did not seem to be interested!
Hugs
Jen xxx
Morning
I think we all have had similar journeys, all scans and investigations came up with nothing with Rog, it was the mental health services who did extensive assessments when he was not engaging with therapists that pinpointed two probable causes, PSP or bizarrely Huntingdons. The diagnosis was then made by the neurologist by putting all the other symptoms together.
In some ways we are fortunate that he appears to have a pure form of the illness, no dementia but all the hideousness of severe cognitive and physical deterioration.
Medicine is not a precise science, but accurate diagnosis is essential as it opens doors for care options.
On a lighter note when Rog was asked some time ago about donating his brain for research after he had gone he said *********.
Bad day yesterday, not his fault, picture this, in his recliner having a sleep I thought, on one of my checks he has wriggled right down so his head was on the seat and the rest of him was hanging over the end!
Carers in for my daily three hours this pm bliss off to the allotment to talk to the lettuce!
Julie
Morning Julie
That made me chuckle with his recliner Archie does that with his bed we now don't let him have the control as he used to try and get to bottom to get out
The carers are here soon and they are my breathing space
Sue xx
Hi Sue, my husband has CBD, but was originally told it was MSA, our neurologist sent us to see a professor Leigh who is an expert in this field, no biopsy no nothing he did some visual tests with Ian's eye movements and reflexes etc, and told us he was 99% sure never heard of a biopsy for this condition maybe ask your Parkinson's nurse or GP if there is anyone with more localised knowledge you can be referred to
Hope it all goes well, Ian has had this for 11 years now, and he can't walk or do much for himself but he is always smiling and interested in news so you have to just keep going I'm afraid
Janet x
Hi Janet
In total Archie has had this about 4 years over the last 18 months he's declined so much where now we have carers that are here 7 hours over the day and 7 night sits
I agree that's all we do is keep going
Take care
Sue xx
Ah, Here are some of Strelly's words on the subject.
Thank you Strelly!
My husband has been diagnosed with PSP aged 48
It's been a tearful few weeks
THEY TOLD ME HE WILL NEVER COME HOME HOME AGAIN
