Normal pressure hydrocephalus, has anyone asked about the similarities to the symptoms of PSP ? I have asked every doctor we have seen and they all dismiss it but given how similar the symptoms are I would like someone to at least consider the possibility !
P is getting worse by the day, mobility, falls, cognition etc, etc yet although the medics say he is not typical (what is?) they still refuse to investigate for NPH. I know I may be clutching at straws but what option do we have ?
I feel that P has been 'pigeonholed' and that the medics are just fishing around for 'try it and see' palliative care.
Sinemet has not worked or Exelon for the memory, I wonder what else they will suggest ?
Sorry for the rant but P is becoming almost impossible to move around and requires 24/7 attention.
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NanBabs
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Sorry not to have anything but concern and sympathy to offer. I don't know anything about NPH. How was the original diagnosis made? We had a brain scan that showed a very characteristic shrinkage in one area of the brain, so we never have questioned that my guy has psp. I haven't seen such a quick downturn with him. Are you in the UK? Can you get a second opinion? Is there any chance he might have an infection of some kind that is making him go downhill? Many folks here on this site have had that experience. I hope someone else chimes in with something more useful, but I didn't want you to think you weren't heard. Wishing you well, Easterncedar
MRI and CT scans were " normal". Parkinsons consultant gave us a diagnosis last June of probable PSP but with MSA. A neurologist told us in December that it could be Lewey bodies dementia with Parkinsons. All agree that P is not typical of any of them and the memory clinic said last Spring that he had very mild dementia, which is certainly not mild now !
He had a serious crisis last November when things got dramatically worse in a very short time and since then although the deterioration has slowed again, things are much worse than last October.
We are in the UK and await `a quick appointment` with a local neurologist in early June.
Care workers etc have all suggested infection at some point but every time we check it, there is none.
I hadn't heard of NPH before but have now Googled it and the symptoms do seem very similar. How did you find out about it? My husband's neurologist said PSP differs from other neurological diseases as the sufferes have the fixed stare, unable to move their eyes very much, or as in my husband, at all. He said that although they can't confirm the diagnosis until examination of the brain after death, he was as certain as he could be that it was PSP because of the eyes. Can P move his eyes? If he can keep them open for long, does he stare? Have the powers that be said why they won't investigate NPH as you have mentioned it to them? I would be interested in their reply. My husband was diagnosed in 2010 and since that time he has gone for several months with little change and then he will suddenly dip with more symptoms taking hold. He will then go for several more months when I get used to how he is, almost lulled into a false sense of security before all hell breaks out and we are again on the awful downward track that PSP is dragging us down.
I read about NPH in a newspaper article a few years ago and the symptoms it described seemed very familiar as P had a strange gait i.e. walking like a penguin from side to side (or like Charlie Chaplin !) along with increasingly common backwards falls, memory problems and urine problems it all seemed to fit.
Since those days 3 or 4 years ago things have progressed and P can barely walk now even with a frame and me supporting him.
P`s eyes do look strange sometimes but he can move them and his vision is better than mine ! He does stare sometimes too.
As I understand it, NPH can be diagnosed by a lumbar puncture which releases fluid which then relieves pressure on the brain (often only temporarily). A stent could be fitted to provide a `drain` for the excess fluid and although it could relieve symptoms it is not a cure.
I really don`t know why my queries have been dismissed/ignored and when I asked the Parkinsons consultant he immediately viewed P`s scans again and said nothing showed up and they were normal.
For the first time yesterday P admitted to `feeling fed up with this illness`. That makes two of us then !
HI I HAVE NOT HEAR D OF HTSI NPH EITHER AND HAVE ACCEPTE DMY DXS OF PSP WITHOUT MUCH QUESTION
I WAS DXD IN DEC 2010 AND AM LCUKY TO SITLL EB HER EUPRIHG TMOS T OF THE TIEM APART FROM WHEN MY BALANCE JUS TGOE SAND I AM FLAT ONT HE LFOOR ON MUY BACK ORMY FACE
BUT IT COUDL BE A LOT WORS EI KNWO THAT AND WISH MY PARTNER WOUDL ACCEPT THAT TOO
My husband was also thought to have hydrocephalus, suggested by his neurologist after discussing the CT scan changes from 2008 to 2012, showing an area in the centre with fluid. We attended an appointment in Addenbrookes to have a lumbar puncture, but my husbands blood pressure was much too low to go through the procedure. In the meantime the neurologist went off sick, and is still off after 18 months. My husband then deteriorated quickly and was admitted to hospital where a locum said he has PSP and he cancelled the hydrocephalus test in December 2013.
None of the professionals seem to say that he definitely has PSP, as apparently, he is not typical, although used to fall backwards, but is now unable to walk. His eyes stare and look really vague and is unable to talk. Depending on who he sees, he has Parkinson's Plus, CBD, Lewey Bodies dementia with Parkinson's. As everyone says, people suffer different symptoms, but no definite diagnosis until after death.
I would suggest you request a second opinion and ask for more details regarding the scans. Hydrocephalus would be something which could be treated.
Anne thank you so much for your message. I often feel so desperate for someone to listen without feeling completely foolish. You must feel frustrated for your husband, all the delays when you need rapid action !
I will try to be patient and wait for the June appointment but if that comes to nothing I don't know where to go next.
Surely no one can blame us for exploring any avenue to help our loved ones, after all what more can we lose ?
Do you have a Parkinson's nurse? If so, maybe she could ask for further information for you, prior to the June appointment. All I know is time is not on our husband's side, so anything is worth a try.
Yes, we do have aParkinsons nurse and she nods a lot, smiles and says 'hmm' a lot too ! I have told her about my concerns with NPH and although she made notes nothing has been said since. I asked her if there was anything about my husband's recent decline that I should highlight at the next consultation but she said no.
Banging my head against a brick wall ? Better not, I may be next with NPH !
Like others I am sorry that I can only offer encouragement in your struggle as you champion P - but I do so because I know from experience that it's the only way to get results, even if the answers are unwelcome. We live in France where, thanks to a good GP responding to our requests for second opinions in view of the rarity of PSP, my wife, Roisin, was thoroughly examined by three different hospitals, two in Toulouse and the leading neurological hospital in Paris. We had to accept that it was indeed PSP; the eyes were the critical factor. Roisin died last October but at least we both knew that the health system here had done its best for her. So very best wishes to you and to P.
I would love hear more my husband just passed 2 mths ago psp I have never heard of the other !!! How old is p how long has he had this sounds very much like y pats symptoms at a stage in his disease !!! Where do yu live ????????
We live in the uk. P is 76 next month but we think he has had symptoms for at least 5 years or more. I understand that diagnosis of any of these illnesses is very difficult but that is exactly why we should pursue any possibilities because any chance is better than none. Please don't think I am in denial about PSP or anything else, it is simply that, if possible, we want to know the truth.
It is so difficult these awful diseases My husband started the symptoms 9 yrs before passing A month before turning 73 in the beginning he seemed like he was getting depression Is this what any of yu experienced in the beginning ??????
P started over 5 years ago with poor memory, backwards falls, withdrawal from company (had his hearing tested), altered gait and confusion. He suffered a really bad bout of cellulitis which required intravenous antibiotics in hospital and after that things got gradually worse. He was always prone to being depressed in the winter so we assumed it was that coupled with his spell in hospital.
Altogether it must be at least 3 years of GP visits (we changed surgeries) and then hospital clinics etc before we got a diagnosis. He also has B12 deficiency and Type 2 diabetes.
Hi nanbabs. The first of many symptoms was that lack of interest in social activities at all it seems like the slowing down of cognitive thinking makes them lack the ability to keep up with conversing that too was a big thing the slowing of movement being unsteady !!!! Do yu find this happening ?????
Yes definitely, the slowness of movement and thought is a major problem with us. He has always been a big sport fan but last week he asked to go out in the car in the middle of a big sporting event on TV ! What was a lifelong interest has become just another programme on TV.
Hi again I no exactly what yr. saying that was my pat with the football same thing !!! How is the eyesight ???i wondered if my guy didn't see good enough ? He would not let on he couldn't see !!
Hello. One of the neurologists we took my mother too, when we were desperately trying to find out what was wrong with her, falls, incontinenence, and other symptoms, did an MRI and said he thought it could be NPH. He said that having a shunt fitted would greatly help as it could improve the symptoms. My mother had a shunt fitted, which is quite major surgery. Sadly and unfortunately there was no improvement and she gradually got worse. Alot of the symptoms are very similar with PSP. It was only 2 years before she died that we had a diagnosis of PSP. She went through the trauma of having a shunt fitted, hoping she would be better afterwards, sadly this was not to be.
Personally I think you were right to at least try the shunt because if you hadn't you would always wonder... I agree that it must be very difficult for the doctors to diagnose when the symptoms are so very similar in several illnesses but if there is even a small chance I would opt to take it.
Did your doctor tell you what showed in the scans to prompt your mother's diagnosis ? I am so sorry for your loss but at least you tried to do your best for her.
There is another thing called Whipple disease that my husband has many symptoms. Such as suntanned skin, diarrhea, eye problems, heart issues, etc. it is a bacteria which can be cured. But, docs said it is just too rare to consider and would require bowel surgery to confirm. I just think it is so difficult to diagnose all these things because they all affect the same part of the brain, even though through different mechanisms.
I feel your pain. My husband was diagnosed with Hydrocephalus in the fall of 2018. The diagnosis was confirmed by being observed by a Physical Therapist before and after a spinal tap. The difference was black and white. He got a shunt and had an awesome nine months. In the spring of 2019, I noticed changes in his eyes, speech, incontinence, drooling, etc. He was diagnosed with PSP in August 2019. Yup, he has both. The shunt malfunctioned on Dec 31 requiring two emergency brain surgeries in 5 days. He's now in rehab learning to walk, building strength, working on speech and memory. But no one knows what symptoms are PSP and won't get better vs. Hydro and may get better.
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