By following the medical diagnostic, my father’s illness is Parkinson-Plus. However, the SPECT test did not help to support it and it does not show any relevant information about. The doctor says that in 8% of cases SPECT test is invalid and that was our case.
Another point is that doctor said that the test could be repeated in 1 year and not before.
Do you know any link of information regarding SPECT nuclear test and diagnostic of Parkinson-Plus/PSP?
Here another link where it is mentioned to help the diagnosis of Parkinson
I'll give you a bit too much technical info first....I'm guessing they used a compound called 123I-FP-CIT (that binds to dopamine receptor transporters, and then these are imaged with a SPECT study on a gamma camera).
I was involved in the use of a similar (radiopharmaceutical) compound some years ago that attempted to distinguish between Parkinson's and atypical-Parkinson's. The compound we tested did not produce very good results, and this is well documented in several scientific papers over the years.
The compound used on your father is often used for Parkinson's patients but it cannot really diagnose Parkinson's but it may help to confirm the clinical findings of Parkinson's. It is used to rule out other diseases. It is sometimes used to follow the progression of Parkinson's (probably quite an unnecessary and expensive test, along with a radiation dose, to identify the progression).
Additionally, it cannot differentiate between MSA and PSP and Parkinson's.
Some recent PET (positron emission tomography) imaging compounds are much better at distinguishing PSP from Parkinson's (they can actually show up the faulty tau protein that is seen in PSP but not in Parkinson's). However, PET scanners are less available, more expensive and the compounds used in this case are more research orientated and probably not widely available.
Remember, (and I hope I'm not being too morbid) that PSP (and similar neurological diseases) are usually defined/diagnosed by clinical signs (and scans just give some help with diagnosis). However, only an autopsy (brain) can give a definitive diagnosis!
All the best
I just think we should call you " Doctor Strelley" ! you've certainly done your research...for all of us! I appreciate it and I would think most others do too! =)
Joan
Thanks Strelley for this valuable input. Do u know anything about effect of flight on a person like me with psp- p? TIA
Thank you so much Strelle for your clear technical approach about SPECT and PET.
That is a good research on it. Later on this thread Diane mentioned about another test called PaT test. Could this test provide any clue over the diagnosis ?
Strelley, Thanks for your input on this subject. It confirms what our neurologist at the university said. He indicated that symptoms, particularily early falls and verticle gaze, are signs of PSP.
Jimbo
I certainly agree Joan. You may have missed your calling Strelly. Good work and we are thankful to have you on our team.
Linda
I agree with Linda & Joan My neurologist is getting a second opinion on me by a fellow neurologist in the same consulting room in July. This after my consult on Wednesday 29 May when I was seen as having bad balance & walking. I had just returned from a flight over to the East of Australia arrived on Monday 1 am & had noted problems with balance while on the flight also I had shakes that I had not had previously. My Neurologist is a clinical one so I don't really know what he's hoping to get from second opinion. marytea13
You say you have PSP-P (the Parkinson's sub-type). I don't think there's any real indication that having PSP and flying create difficulties. A lot of people have balance and dizziness after flying in a pressurised aircraft, due to the affects on the middle and inner ear. They can persist for a short time or even many days after the flight.
Sorry, I cannot be of more help with your query.
Thanks Strelley I found it strange as I only had it flying back from east to west and not west to east! I was in a Virgin Aust Airbus beautiful aircraft + attention from staff excellent - we flew business class using our frequent flyers.
Have you asked for a PaT test? This gave us a clearer picture of what mum had going on in her brain and the neuro could pin it down to Parkinson Plus Syndrome /Lewy Body Dementia. After that it was down to the symptoms themselves and they fitted PSP down to the very last dot. We did start proceedings to have mum's brain examined post mortem by the Parkinsons' Society but mum's PSP progressed too fast and the paperwork was not complete in time. But as you will know that is the only true and complete way to know for sure as things stand at the moment.
We did have to accept that each one is different in decline and that infection management is the key to longer survival. Also that there is no fixed time, you cannot know what is round the corner with this and just have to take each day as it comes and provide the best quality of life that circumstance will allow and view things from a daily point rather than keep wondering about the next year or so. Take care,
Dianne xx
Can you describe what you mean by PaT test? Do you mean PET test (imaging scan)?
Thanks a lot Dianne for sharing this information with us. I have asked Strelley more details about Pat test.
Very much appreciated for all your inputs
Just asked Dianne what she meant by PaT test !
Sorry I meant PET scan. A PET scan is a type of imaging that uses nuclear medicine. This type of scan measures important body functions so doctors can see if the organs and tissues in the body are functioning properly. This includes blood flow, oxygen use and sugar metabolism. Doctors use PET scans to and evaluate brain abnormalities. It is performed on an outpatient basis and usually takes about 30 minutes. The process of a PET scan involves a dose of radiotracer, which is injected, swallowed or inhaled by the patient. Once the radiotracer works its way through the body, the patient is moved into a scanner. It is a longer scan than the MRI and more sensitive to finer detail as far as I can tell. It can be compared to show where there is damage and abnormalities which match varying neurological diseases. Sorry if I confused you.
Dianne..
Thanks Dianne for clarifying this. As you'll see from my earlier reply in this blog to mgarca, I mention the newer compounds being used in PET scanning to assist with the diagnosis of PSP.
The original PET scans used (and still use) a compound called 18F-FDG (flurodeoxyglucose) and this indicates sugar metabolism as you noted. There is now a long list of compounds being used as PET agents. (I worked in Nuclear Medicine for 37 years and we had 2 PET scanners).
Jimbo made a good comment about the fact that only certain clinical signs, specific to PSP, are the best way of diagnosing the disease, and scans can often help confirm the clinical findings.
Take care.
.....and that's exactly what I have always said. By the way I am a trained nurse so like you I have a keen interest in medicine and follow new developments with research.
you take care too.
Just replied to Dianne, as she noted that she meant PET scan and not PaT test.
Hope you are finding the answers you want.
All the best!
I think the symptoms will help with the diagnosis more than any brain scan/test. If you have had early falls that is a sign of PSP. If your eye movements verticle are not good that is another sign of PSP. Those two sort of distinguish PSP from other diseases of this type. This is according to one of the top neurologist at our university hospital. Many other symptoms appear in other brain disorders but those two see to be unique. Haven't heard of your test you mention but would think that if it was fullproof others would recommend it in diagnosis of PSP. Haven't heard that statement made.
Jimbo
I agree with Jimbo. I asked my husbands neurologist about having some tests done to verify that he had PSP. He said that there aren't any full proof tests to verify PSP. I could go to the PSP clinic here in Dallas but they would base it mainly on his symptoms which of course were all PSP symptoms. He said he didn't think it was necessary but if it would make me feel better toi go ahead. After several months the symptoms became worse & there is no doubt he has PSP.
Annielee
Aunts diagnosis was made on the details that she tended to fall backwards and her eyelids just wouldn't stay open for her, yet she has perfect reading vision. I miss her beautiful eyes but every so often she manages to open them and stares directly at me and smiles widely...I love these moments.
Prior to PSP diagnosis she was down as 'possible parkinsons', we are suspicious that she refused to go for the tests when she was more able bodied.
K80y
My wife has PSP and there may not be a cure for PSP, but there is a drug that slows the progressionDoes anyone have any idea of the incubation period of PSP?
The vagaries of PSP
A Neurologist is Asking YOUR Help to do a Study On a DRUG that Extends the QUALITY Of LIFE and CAN Restore LOST FUNCTIONS to Those With PSP
Where is the old Psp forum?
