Confused !

We were told my husband has PSP in September 2010 after an MRI scan and various other tests. In April this year we had a routine appointment with the same neurologist. After the consultation he said he could now confirm my husband did have PSP (we weren't told there was any doubt). He made an appointment for Colin to have an MRI scan to check on progress of deteriation of the brain since 2010. Today we received a copy of a letter sent to our GP. It said,

"Your patient's brain MRI scan shows mild global cerebral atrophy but without any typical features of PSP. While this does not exclude the diagnosis, the imaging has not identified any other potentially treatable pathology."

That was all it said. Colin has all the symptoms of PSP. Can anyone put this in plain English for us please? PSP or not PSP?

Nanna B

27 Replies

oldestnewest
  • i thought that PSP coudl nto be determine duntil after death, and tha tan MRI scsn coudl nto do that

    i was dxd in dec 2010 by t he neuro looking a tme and listening ot my probs with hadnwriting / co ordination / walkign and faling/eyes closing and dryineg out

    i htinkkyour husband does have PSP but wha the lette ris sayign is that ther eis no treatment fo rit - does thsi make nayh sense?

    LOL jILL

    :-)

  • Thanks for this Jill.

  • Dorothy-Thompson

    Hi NannaB, I am so sorry that you are having what seem like conflicting reports. My husband's first MRI scan which was carried out privately said he had symptoms of a TIA or transient ischemic attack.

    He was finally diagnosed with PSP in October 2010 and the neurologist told us that there is no actual test that can determine the diagnosis. It comes from observation and the deterioation of the person, first the loss of balance, then the falls, then the slurring speech, the inablity to be aware of his surroundings and the changes in personality. The final proof positive is the inability of the patient to maintain a downward gaze. Following the diagnosis you're then told that there is nothing the medical profession can do for you so you should go home and make the best of it and get all the help you can.

    And in all of this is the heart wrenching knowledge of knowing that the person's core intelligience is still there in the beginning and they know just what is happening to them.

    Just tell your doctor you want it put into plain english

    regards

  • This is exactly what happened to my late husband, so difficult to comprehend when it first hits you.

  • Hello NannaB

    It does sound confusing, but as we have noted before on this forum, PSP is primarily diagnosed from clinical signs and NOT scans or other tests. Any neurologist should be able to determine the cardinal sign of vertical gaze palsy (often starting with the inability to voluntarily look down, then later unable to look up, and finally with some sufferers, unable to look sideways. Then there are slow eye movements called saccades. These classic signs give the name of the disease as being progressive supranuclear palsy). Once this cardinal sign shows along with falling, posture and gait, and balance problems, then PSP is the most likely diagnosis (that is, signs of Parkinson like symptoms, but additional symptoms - hence the name atypical Parkinson's or Parkinson's plus - as I've described - and in most cases without any tremors). As the disease progresses, the diagnosis of PSP becomes even clearer.

    Yes, it is true only a definitive diagnosis can only be given at autopsy because they look at the places of neuron loss and the type of protein that has gone wrong (tau) and the type of cells that have died and how they look under the microscope (because the protein looks a different shape with different diseases).

    With all the symptoms your husband now exhibits, I would have thought that the MRI would show more defects. The most notable and usual sign for PSP is the atrophy (death) of the some of the midbrain area and on the correct view on an MRI it looks like a hummingbird or penguin (and is called the "Hummingbird sign"). Ask about this when you next see your doctor. Perhaps the radiologist reviewing the scan missed this (but I cannot see why). With PSP there is cognitive problems that arise from the frontal cortex and recently doctors have found more atrophy in the frontal and parietal cortex of the brain than previous recorded. (Your MRI report is seeing this with the term "mild global cerebral atrophy"). Another part of the brain that is often affected is at the back called the cerebellum (particularly the dentate nucleus area) and this can show atrophy on the MRI scan.

    The radiologist who gave the report on my wife's MRI noted the midbrain atrophy (Hummingbird sign) but nothing else. However, my neurologist saw more than he did on the MRI, because he felt there was some evidence of frontal cortex and cerebellum atrophy. So, it's possible that radiologists don't always pick up on all the evidence for PSP.

    Irrespective of all this, I shouldn't worry about the MRI result, because, as mentioned, the clinical signs are the main diagnostic tool.

    Sorry if this is a bit technical, but you can always print this off and show your doctor and he can ring me in Australia and I'll chat with him about PSP!!!!!!!! I'm being flippant!!!

  • Strelly, Our neurologist at the University hospital said that the "Hummingbird" on the MRI doesn't SPECIFICALLY relate only to PSP and can be caused by other diseases. As in my post below it is my opinion (told by three neurologists) that the MRI is used more to rule out other causes for the symptoms such as strokes, brain tumor, etc. and not for speciffic diagnosis of PSP. However, I could be wrong. I think the misdiagnosis as PD after an MRI sort of points out that fact. Not trying to be argumentative just saying what I know.

    Jimbo

  • Hi Jimbo

    As you will note I have emphasised the need to diagnose PSP through clinical signs (although neurologists have often been incorrect, as noted in my answer about CBD, and you mentioned this as well).

    There are many neurologists here in Oz who use the MRI hummingbird sign as a method of differential diagnosis for PSP, but it is becoming more accepted as just another diagnostic tool. Recent studies have given the midbrain atrophy hummingbird sign for PSP as showing 100% true positive rate and over 90% giving a correct negative identification (this is sensitivity and specificity values). This is a pretty good diagnostic tool.

    It's been shown in many studies that the hummingbird sign does not show up with idiopathic Parkinson's disease, MSA and CBD. Other diseases that may show the hummingbird sign are few and the clinical picture is not like PSP.

    I think your neurologists may well use MRI itself to show possibilty of brain tumours and strokes etc, but such conditions would have to be causing a specific type of midbrain atrophy to show the hummingbird sign and I think this would be extremely rare. Plus the symptoms would be quite distinctive from PSP (as the PSP progresses in particular)

    Having said all this, I think using any diagnotic tool like MRI (whether it gives equivocal results) is worth trying. Unfortunately, even neurologists have different opinions, so what chance have we, as lay people, to determine what is and is not right.

    All the best, and thanks for your comments and observations. I am still learning a lot about these neurological conditions, and hope to learn more from such forums as this one.

  • trelley I have just re read your post. I'm possibly in a state of some degree of shock as I was s/b another neurologist on Thursday. He doesn't know what is wrong with me! but says there is something wrong. Physically I nearly had a backward fall with him testing me. But one of the main things is I don't show those typical eye movements as u describe them. He's taking me off Sinemet - gradually & I see him again in late August. He is in the same rooms as my first neurologist. I'm tryring to come to grips with if I don't have PSP what then? Marytea13

  • I had a thought after posting my last answer. There is a closely related disease to PSP called CorticoBasal Degeneration CBD) which is difficult to distinguish in the early symptoms. If your husband's MRI did not show the Hummingbird sign, then it may well be worth investigating CBD (since it has little or no midbrain atrophy and will not show the Hummingbird sign). CBD will often show vertical gaze palsy, like PSP, but it's not as significant as the excessive cognitive problems (not shown as much in PSP). The MRI of a CBD sufferer shows a lot of frontal and parietal cortex atrophy, and there is less in PSP. Also, the MRI usually shows atrophy more on one side than the other, especially since the symptoms for CBD start on one side of the body (and eventally show on the other side) along with a tremor in most cases (unlike PSP).

    I am not sure of your husband's full symptom characteristics and timeline for each, but I have added this bit about CBD because it is often confused with PSP. Quite a lot of autopsies have revealed that a person had CBD when diagnosed with PSP and vice-versa.

    I'm sure you've read up about most of this, so forgive me if I'm just noting something you already knew.

    All the best.

  • Unfortunately you will find this a typical reaction due to the fact that in writing at least the medical people will not commit themselves because they can only state hard evidence and I partly blame the compensation culture for that. However if your neuro said it verbally, it IS his opinion and if the traits of PSP are evident it is pretty much for sure that he has PSP and you need to brace yourself for the rest of it. We had all the same things going on with the neuro being adamant VERBALLY that mum had PSP but the GP, not knowing otherwise, even forwarded the letter from mum's neuro to me saying she showed evidence of Lewy Body Dementia which unfortunately to a lot of people signalled Dementia and I had a hard time convincing them that mum was actually on the ball and reminding them of all the classic symptoms that she had pointing to PSP. Our PSP advisor told us that due to the varieties of PSP we should still regard mum as having PSP due to her symptoms. But this said I am cont|nually astounded that the neuros don't actually take MORE notice or interest in order to help us out and actually build up their OWN knowledge and understanding!

    Meanwhile what you can do is download the descriptors and use a pen to highlight the signs and symptoms your loved ones display so you have this evidence to hand when you are dealing with anyone. Most of all get your Parkinson's nurse on your side as they seem to have a huge amount of sway in getting the specialist attention you require.and indeed with Continuing Health applications you need someone to evidence what deterioration they have seen. Get everything in writing that you possibly can.If you want to send me your email address I can send you more info that my advisor sent me.

    dianne_hemming@hotmail.co.uk

  • Thanks Dianne. My husband was diagnosed very quickly, (4 months) from first seeing the GP, as I had kept a note of all his symptoms for about 18 months. He initially refused to go to the GP as he said there was nothing wrong with him. Friends and neighbours asked me if he'd had a stroke and when I finally threatened to call the GP to the house, he agreed to go. I took a list of 25 symptoms with us. When we got to see the neurologist 4 months later, after scans etc. he had my list in his file. He first fell about 5 years ago and showed signs but we put them down to getting older.

    Best wishes.

    Nanna B

  • dorothy here here peter jones queensland australia

  • Thanks Strelley for your comprehensive reply. When Colin was first diagnosed, like everyone I expect, I read everything I could about PSP but as time passes, I've forgotten some of what I've read. Yours and the other replies has reminded me. That's what's so good about this site, whatever you ask, someone will give you a reply.

    Best wishes.

    Nanna B

  • hi nanna b

    r u ok and iscolin ok??

    I ask as it i s v difficiult keeping up with PSP patients )-I am one so i know!

    just wante dto say hta tmy dxs came about 18 months aftr havign AN MRI scan which only showed SINUSITIS AND MOR ELIKELY )bu tNTO TO ME) A TIA

    I did nto think i could hav ehad one and tjhen i crashed muy car - car a write off me ok -lots of bruises

    so i got a 2nd opinion and the 2nd neuro dx d PSP

    I read aall i coudl but u do forget soem things

    so do nto worry aboaut that

    lol JIll

    :-)

  • Hello Jill, We are doing as OK as can be expected. It's really helpful reading posts from you and others with PSP as Colin never tells me how he feels about his condition and reading your posts helps me understand a bit more. I'm pleased you weren't too badly injured after your crash. When Colin was first diagnosed he asked the neurologist if he could continue to drive. I'd been trying to stop him for some time as we had several near misses and roundabouts were a nightmare. The neurologist said he couldn't tell Colin not to drive but that many people were first diagnosed after serious accidents. He hasn't driven since.

    2 of our sons are dyslexic and I had to test secondary school pupils for dyslexia if it wasn't diagnosed at primary school so I have no problem reading your blogs. Keep blogging.

    Very best wishes.

    Nanna B

  • I think most will agree that an MRI as a specific diagnosis tool of PSP isn't perfect if used at all. My wife had brain scan and MRI but we were told that it was to RULE OUT other causes such as stroke, tumor, etc. and NOT as a clear diagnostic tool for identifying PSP. It is our belief that the symptoms (early falls and vertical eye movements in particular) are what distinguish PSP from other diseases. I believe that an MRI or brain scan can only identify where and to what extent damage has taken place and not the definate cause. Unfortunately a brain biopsy after death can determine the REAL cause/disease. There is a great book written by a woman whose husband was diagnosed with CBD but when he passed on the brain biopsy proved it was actually PSP. Can't remember the name of the book but the husbands name is in the title. His name was Charles. Perhaps someone else will remember the title. Great book and you can learn a lot from what the couple went through.

    My thoughts are that it basically doesn't matter if you have a clear diagnosis of PSP. All the similar diseases don't have cures or treatments either. Just do your best in coping with each twist and turn in how the disease is affecting your loved one and not worrying about what the underlying cause/diagnosis may be. As in the book I mentioned the diagnosis could be wrong so it doesn't make any difference in day-to-day living.

    Jimbo

  • Thanks Jimbo

  • hello everyone hummingbird or no hummingbird today i feel great what about the rest of you do you all feel great or st least good peter jones queensland australia psp sufferer

  • Hi Peter, so pleased you are feeling great today. I'm feeling very tired after my darling hubby woke me up 6 times between midnight and 6 a.m. and then the alarm went off at 7 so I could be up by the time our builders arrived at 8. 3 toilet trips and got up to buy me a birthday present (my birthday is in March) then wanted to get up at 6. My mobile rang at 3.30am. I have to keep it on as my 96 year old dad has a lifeline and I am the first call they make when he falls, doesn't get to the toilet in time etc. There was heavy breathing on the other end so I kept saying, "Dad, is that you ?" Eventually my hubby next to me said, "It's me". Somehow he had managed to get the home phone off the wall and dialled my number in the dark. He can't do it in the daylight. I can only think that years ago I put my number in on speed dial and he pressed it accidentally. My husband is asleep in his recliner chair now so I think I'll rtake a little nap before going to dad's. It must be night where you are now so I hope you are sleeping. Hope you still feel great when you ewake up.

    Nanna B UK.

  • nannab boy oh boy you made me feel so tired i will have to go to bed in a while\

    the joys of being a carer i could not be one for quids well the birthday present its called better late than never mate you sound like you have a very active life but isnt it fulfilling and uplifting for you as well as being fit all those trips to the toilet i always feel great nanna b i was a bit washed out after cracking my head open after a fall i had but i'm back in action now anyway thank god for the carers and your right it is night time here its 9 pm and my carer is fast asleep and the television is doing its nut on its own out there so i had better call out to her that i want to go to the toilet i must have worn her out i will let you know how i feel in the morning see you take care you are doing a wonderful job and im sure your hubby

    appreciates you more than he could ever tell you peter jones queensland australia\ psp sufferer oh happy birthday to you for march next year just in case i forget i still feel great \ and you have made my day thank you for your reply

  • hi nanna B still feeling great mate i had a good night sleep went to 6 am this morning usually up half the night watching tv anything from 2 am SO I DON'T KNOW\ this psp is very strange but never mind another day here that does me fine its better than the alternative\\ i hope you had a better night mate and got a bit more sleep and peace peter jones quieensland australia

    regards to hubby and tell him not to give in and that goes for yourself as well

  • Wow! Peter, 6 a.m. that is a good night. We had a better one last night, only up 3 times. Colin sends his regards to you. He is a very slow keyboard user so doesn't like typing but I keep him informed of what's going on here.

    Keep positive.

    Nanna B

  • hi nanna b and colin hows it going ok i hope thanks for your reply mates and colin you would not be any slower than me on the keyboard i type with one finger so i am pretty slow and im not to good on the computer as a whole either but my writing has had it and this is the only way i can express myself until such times as a few more things go on me\\\\ i did not think i would have the patience to type with one finger but its growing on me \\ give it a try sometime you don't have to write an essay or book just a couple of lines will do anyway mate take care hope to hear from you sometime or other hope you are feeling ok peter jones queensland australia psp sufferer and feeling great person\\\

  • Hello Peter, I am a psp sufferer and I am feeling ok. my wife does everything for me.

    Hope you are still feeling ok.

    Colin husband of Nanna B.

  • hi colin i think thats great mate i am glad that you are feeling ok we will get there in the end just stick with it mate \\\\i am really happy that you went on computer thats a real great start\ i thought blimey hes had a go at it \ i cant tell you how pleased i am for you \\ my wife is just the opposite she makes me do everything myself well nearly everything as much as i can do on my own anyway \\\its good to see you having a go mate good luck to you \\dont let it get you down stick with it colin

    peter jones queensland australia psp sufferer i am still feeling great

  • hi jo jo you have been quiet for a while how is your mum going along is she ok or as well as can be expected and what about your self are you still keeping ok i hope so \\ say hi to mum for me will you and tell her to keep her chin up take care peter jones queensland australia grandad

  • hi judy how are you going ok i hope have not heard anything from you for a while mate just checking to see if you are ok and everything is going good for you peter jones queensland australia psp sufferer

You may also like...