How Long Did Diagnosis Take?

I have done extensive research for the past 18 months - my mother has been ill since 2007, progressive from walking and talking normally, to being permanently wheelchair-bound, and many other faculties are affected (her speech, swallowing, vision, co-ordination, volume and tone of voice, etc.) PSP is the ONLY neurological condition which is my mum to a T when reading everything about it. Her neurologist has confirmed that she has a serious progressive and degenerative neurological condition, she has been referred to Kings College Hospital in London (but that was 4 years ago), she spent 5 months in hospital last year after falling (for the umpteenth time that week) and fracturing her ankle... her neurologist won't listen to me, and he does not spend any longer than 10 minutes with her every 6 months, always commenting about the rapid deterioration, but never going any further... he wanted her in for a day of observation, scans, etc. again but after a noro-virus outbreak and a ward closure for a weekend, this has been 'postponed indefinitely'. It is incredibly frustrating to watch, and is heartbreaking too. My mum's personality has also been affected, she is demanding, very 'curt', self-centred, etc. but when she is so ill you can't neglect to give her the help she needs. She has carers in 3 times a day and when she was in hospital, various staff members (nurses, registrars, etc.) agreed with my observations about PSP and how exactly my mum displays these symptoms, and has deteriorated accordingly. Has anybody else had this much trouble trying to obtain help from the one person who can make the difference in this - the neurologist?? Best wishes to you all, I have joined only tonight but have seen many posts demonstrating a community of like-minded and caring individuals, all very brave in their own rite in the fight against PSP, Natalie x

17 Replies

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  • Hello Natalie

    Sorry to hear you are having such problems getting a diagnosis for your mum's symptoms. From what you are describing it seems there are a lot of similarities to PSP but perhaps you should request, through your GP, that you are referred to a different neurologist? I hope you are successful with this. It is your right to request an alternative if you are not satisfied, so give it a try.

    Take care and I hope you manage to sort something out. Love to your mum too

    SuzieQ x

  • Thanks Suzie. If I wasn't completely convinced I would not even log onto her as I know this is a serious forum... I will talk to mum and try and get back to the GP. every other condition that can be diagnosed with specific testing or scanning (ie, MND, MS, Parkinsons, Huntingdons, etc) has been ruled out. I think alrwady it helps to know there are people I can talk to on here. much appreciation, Nat xx

  • Hi Natalie

    I thought I was reading aBOUT MY MUM THERE! Mum died this Christmas having had PSP for 8 years. It has taken me 5 years of knowing it was PSP to try and get a diagnosis....we had strokes, heart attacks everything. She also had operations on her eyes (no need as it was PSP) We finally got a diagnosis last May but it was a bitter triumph as in a way I wished it hadnt been PSP. Everywhere we went we had to explain to consultants etc what PSP was. Take your folder of PSP with you whenever you see anyone or the little cards from PSPA..they will help.

    Don't give up.......push, push and insist it is PSP. Its not only the vision, falling and swallowng but the characteristics and persanality that changes which the docs never ask about but are an important factor!

    Take care and keep pushing1

    Jan x

  • Hi Natalie.

    My husband was diagnosed in June , after 4 years of pushing and pushing,with an old neurologist. 8 months ago we demanded a second opinion.The new neurologist diagnosed it in the first visit.You are entitled to see another Neurologist ,so do that asap.Very few docs etc seem to know about this dreadful illness.

    Wish you the best

  • Natalie - that is a dreadful story, even sadder because it does happen. Please get to see another specialist at least when you get a diagnosis it will be one less fight for you

    x

  • hi Natalie

    welcome to the site!

    i had to pay to ge t a 2 nd opinion from a different neuro and it was well worth it as in dec 2010 i had the diagnosis and he suggested PSPA/ sccial worker /physio four wheel frame/ power of attorney etc e tc and i got everythign in place iexcept the EPA the last one)

    i have been quite lucky as i now see him pn the Nhs and i think i have the slow version as i am still upright although fallign dozens of times a day in recent months and an moving to a ground floor flat at en do fjan or beg feb

    keep smiling foryour mums sake -= the personalithy changes r v difficult 4 the patient and their nearest to deal with

    (My partner has only known me since the psp and he says i am so demanding - give nothign back etc etc )

    love jill

  • Dear Natalie,

    I can only repeat what the others have said, go back to your GP and ask for a referral to a different neurologist! I'm so sorry it's been such a struggle for you and hope your GP is sympathetic. I also think you would be justified in contacting the PALS (patient liaison service) to complain about the lack of interest your current neurologist has shown in reaching a diagnosis for your Mum. You could direct the GP to the PSP association website (www.pspeur.org) which has a section for Health Professionals with lots of useful information.

    In the meantime, come back to the forum as often as you like - we won't "brush you off" - we've all been where you are now.

    Good luck

    Love

    Kathy x

  • thank you all so much for all your encouragement. There are several changes that have happened including physical and emotional changes too, which I have previously mentioned. When Mum was in hospital, because it was for a fracture and orthopaedic surgery, she was in an orthopaedic ward but certainly the staff there agreed with me and the information I brought into show them, but they said their hands were tied as they were not the neurology department, despite the neurologist being on the next floor down in the hospital. I will pursue this, and I feel strengthened to do this with your encouraging comments. My heart goes out to you all - it has been difficult as my mum is on her own and I am her only child and have two young children myself, so juggling things can be difficult. I am certain it will be easier to deal with if somebody will listen to us. I would say she is well into stage 2, so I am truly hoping she gets the help she needs soon. I think the biggest frustration for her is that what she has and what is taking her life away isn't being given a name. The most her neurologist ever says is that he expects every MRI she has to show further neuronal loss every few months. Armed with this support now, I will endeavour to get the answers for her and any additional support she will need. Thank you all, speak later today xx

  • Just lost the comment I was typing so an incomplete blog may arrive! I have a more positive note to make - originally my husband was under a consultant at the ear/nose/throat hospital because of problems with his throat, however nothing conclusive was found. At my request his GP arranged a visit to a neurologist this took around 6 months for an appointment but within 10 minutes consultation with the neurologist (from Leeds) Chris was diagnosed with PSP two simple tests were carried out, one was for Chris to follow the consultants finger, now I understand was checking his upward/downward gaze, another test was to ask Chris to stand with his back to the consultant and to fall backwards, there was something in the way that Chris fell (obviously caught by the consultant) which indicated PSP, we were told that Chris had probably had PSP for 2/3 years.

    We found this consultant to be so caring in his explanation and in hindsight would have preferred it if Chris had stayed with him but he suggested that Chris see a consultant at a hospital nearer to us which would be more convenient, at his first visit with the new consultant Chris was told quite bluntly that there was nothing he could do to help him but to advise him on pallative care. Since then we have met a Dr. in the same hospital very conversant with PSP and would like to keep in touch with Chris Chris is in a care home at present but about to move to a nursing home - the care home have not been sympathetic to Chris's illness even though I have supplied a lot of information from the PSP Site, I was told that they are more used to dealing with elderly people with mild dementia! one of the carers though had obviously read the information and was very interested

    My thoughts are with you all x

  • Everyone's story of diagnosis PSP is alarmingly so similar and it is truly important to be correctly diagnosed so that the extent of the condition can be truly discovered - many PSP sufferers seem to be diagnosed as Parkinsons, and in our area of rural Wales we had to pay for a consultation to prove it wasn't Parkinsons and thus heard for the first time of PSP. Reverting back to seeing the diagnosing consultant on the NHS over the past 4 years has not resulted in any working treatment - in fact the drugs seemed to make the emotional and behavioural problems (and incontinence episodes) much worse - as we have discovered since my husband decided not to take any medication except painkillers! He has a slow progression of the disease and I have been caring for him 24/7/365 for the past 6 years. It is impossible for a care home to give the type of care that he needs - how do they retain the dignity of a big, proud man locked in a largely speechless, dribbling body, freezing or unable to move without losing balance, able to only concentrate on one thing at a time but inside his head to still think he can do everything as he used to - at times as sharp as ever in his judgement, at other times incapable of thinking at all.

    We have recently moved to Somerset to be nearer to family and hopefully get help for me and some type of outside input for him, but what?

    I am lucky in that I do not have family or job commitments so can devote myself to sharing my husband's "life sentence". But even as I am, its tough - my heart goes out to all of you that are juggling your lives to help loved ones through this!

  • Dear Natalie - I totally sympathise with your experience with neurologist - we spend 20 minutes every three or four months, and apart from noting that the illness is taking its course, we come away with very little - have also experienced lack of help from NHS who seem on occasion to more worried about being sued than helping - i.e., we wanted a hoist on a hospital bed (he might sprain his shoulder and we might sue - as if) and also rails on bed, again if he tried to climb out, they could be sued. It can be so dispiriting and then you meet a district nurse who is wonderful and suddenly the sun comes out! You are obviously doing brilliantly and it is so helpful to exchange experiences. best wishes Ruth Ward

  • Hi Natalie - I was told by the neurologist that there was very little he could do after having diagnosed Peter with PSP. Unfortunately I do believe this is the case and it is down to the carer with help from the GP (or not in our case as the practice does not seem to know what PSP is!).

    Ali

  • Hi Natalie,

    I have had a similar experience to you in gaining a diagnosis. The first neurologist my husband saw said he just had a benign tremor and it was nothing to worry about. Through his GP he was refered to another neurologist. After further blood tests and a DaT scan, which showed a reduced uptake of the isotope in the supranuclear area of the brain, the neurologist was very reluctant to give a diagnosis. I suggested my husband had psp. The neurologist accused me of studying the Internet in too much detail, eventually, he reluctantly agreed to use psp as a working diagnosis. Since that time my poor husband has followed the psp pathway of deteriorating walking, speaking, eating, talking and emotionally he is very labile.

    I wonder why the medics are so reluctant to give the diagnosis, I know it is devastating news, but we found it helped having a name to this condition that is robbing my husband of everything .

    My best wishes to you.

    Peter3.

  • Hi Natalie

    As like so many others, we were told in 2004 my husband had Parkinson's Disease. We had been seeing a neurologist at the local hospital. He spent very little time with us and tablets he prescribed for Richard made no difference. I felt he was wasting our time.

    All the symptoms you have mentioned do seem to point to the classic ones of PSP, so could I suggest you do as I did. Write a letter to your mum's GP asking if they would refer her to a different specialist for a second opinion. Make an appointment to see the GP (together) but drop your letter into the surgery early that morning. The doctor then has time to privately to read your concerns; saving your mum unnecessary anxiety about her own symptoms. Most GPs are happy to refer you to another neurologist. The new guy we saw was really good and did thorough medical checks immediately; as well as brain scans over the next few weeks. When we returned for the results, Parkinson's was ruled out and he showed me the brain scans on his laptop. I think he thought I was a nurse - I am not - I had just read a lot and had got all my PSP facts right before I went. He said, "I think I have to agree with you. I believe Richard has PSP".

    From then on, we joined the PSP Association, I had a copy of their Carers' Information Pack, I went to the local PSP Support Group and I spoke to their PSP Nurse Specialist whenever I needed help. The Association sent the our GP information booklets on the disease and later when Richard went into a neurological residential care centre, the PSP Association Nurse came out to talk to staff about caring for people with PSP.

    Many medical professionals - sad to say - still no very little about this disease, so do read up yourself as much as you can, and if you have to TELL THEM what you expect from them, then so be it. Join the PSP Association and you will be put in touch with their Specialist Nurse in your area. They are absolute angels.

    Sadly my husband died in April of last year, but he had the best care ever. I cannot thank the PSP Association enough and I still continue to help with advice on both their website Forum Page and on this one too, when I can.

    Love,

    Maggie

    REMEMBER: Don't take NO for an answer - Those who shout loudest, get heard!

  • Dear Natalie

    My heart goes out to you - I too have been down the SAME path as you are treading with my own mum.

    Last September I took her as a private patient, to see Professor Lees at the National Hospital for Neurology in Queen Square, London. He then arranged for an NHS inpatient admission within weeks, and she had 10 days there of thorough tests. Prof Lees believes my mum may have MSA, but he WILL listen, and he WILL arrange for tests to try and find out what is going on. Can you arrange to see him? I would recommend it. The more opinions you seek the better. And they know about PSP, MSA and other rare illnesses there, it's their specialty. The number for Roseann his secretary is: 020-7391 8993 or email: roseann.mccrea@uclh.nhs.uk

    We went to see him last month, for follow up after my mums inpatient stay in November, and he will start her on some trial drugs (not sure what yet). It doesnt change the fact that she is getting worse, but with that discharge summary saying MSA, it means everyone - GP,. neuro-physio, OT, hospice, is now onboard and LISTENING to us. We - you and I, Natalie, as carers, need all the help we can get, and our mums deserve to be listened to and looked after, not pushed to the back because no one really knows what they have got. We have to keep fighting for recognition of these rare illnesses.

    Keep in touch and please let us know if we can help at all.

    Much love

    Clara XX

  • Hello Natalie,

    Even after her diagnosis, the neurologists had very little they were able to offer my mum. The advantage was that we had a label, and were able to get support from PSPA and to start to educate the the carers and AHPs.

    Push for the other opinion- I've heard more than once of experienced neurologists being able to diagnose PSP almost at first glance- a diagnosis will mean you can start to get appropriate help.

    It's great that you've been able to find out so much about PSP; though there aren't happy stories, at least you're beginning to deal with that. I'm glad you found this site!

    Best wishes

    Fiona x

  • Hello Natalie

    I have just introduced myself to the foram. Like many of you I could not get a label Our first neurologist said the only way you could get a name was by autopsy add told us my husband had one of three C.B.D (he was diagnosed with this in June because he had developed an allian hand .P.s.p and PARKINSONS do not get this so said our 2nd Neurologist.We have moved house to another town and at the moment we don't have an appointment for a new Neurologist.Our new Doctor has never heard of it, so that's very en couraging.But no problem I have just joined the best forum with fantastic people "

    I wish you all the very best

    Ellie

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