Recommend a neurologist/medicine review?

[LeighWoodward]

Morning all.

Just wondered if anyone can recommend a neurologist for us to take my dad to see. He's been diagnosed with "some signs of parkinsons" about ten years ago now.

The issue we have is he goes from sitting chatting, eating his lunch himself sensibly and chatting about current affairs, to a zombie type state where he talks about growing 3rd arms, teeth in his for head, ball bearings under his skin and many other trippy type things.

It's the bizarrest change in a person you could ever see and it just doesn't seem right. If it's his brain then why does it follow the same pattern every day and why does he fluctuate so much between a poorly relatively normal human being to one with severe mental illness. I'm guessing this may be normal, but it doesn't feel like it to us.

Have asked his Dr for a review and to see a neurologist but don't seem to be getting anywhere fast, and to date the reviews just keep getting done by Parkinsons people with the same one track answers 'we'll he has got parkinsons you know'.

Tragically it just feels like giving him his medicine is poisoning him so would like to get a full review done by someone who is aware of the possible psp situation and potential clashes /side effects of taking the cocktail of pills he's on, and we're not convinced are helping. My mum is happy to pay for a private consultation but is under the impression there are not many sbout that may be able to help us.

Does anyone know where we should be headed and who to see?

As always thanks in advance for any input.

Best to all.

Leigh.

[Kevin_1]

Hi Leigh

These symptoms sound like the sorts of things that can be caused by over medication with some medications or possibly a UTI? Those things should be checked out by your Doctor.

I have read posts here where folk have some hallucinations which appear to relate to PSP. Though my understanding is that they are not persistent. They just come and go.

I take it that your GP is not keen to refer on to a Tertiary Neurologist. Ordinarily a GP refers on to a local secondary neurologist in the first instance, but with complex and difficult to diagnose conditions they bump it up a lever to Tertiary. These neurologists are super specialists and they generally have a lot more resources at their disposal for diagnosis.

You have a right to a second opinion. I would formally ask the GP for one at the tertiary level.

Your GP will know who they can refer to in your part of the country.

If you are getting nowhere and decide to go privately come back with what cities are near enough that he can get there and I am sure someone here will be able to recommend someone fairly locally.

Best to you

Kevin

P.S. A clear diagnosis would et him come off quite a few meds. I would expect.

[LeighWoodward in reply to Kevin_1]

Hi Kevin, yes infection like symptoms but every day, follow a similar pattern trouble is don't want to mess with the medicine. Has been repeatedly checked for infections, always negative. But they come on like that but are not constant all day. Seems fine and with it lunchtime, then the afternoons he goes off the scale a bit loopy. Talks utter rubbish etc.

We have asked for a referral but all seems a bit reluctant and very slow, ie yes we'll write to you and so on. Very frustrating as days and weeks drifting by.

We spent 15 months travelling from all parts of the country when dad had his anaphalactic shock, we are in Northants, but happy to travel anywhere. I had a feeling there may be someone in Oxford and Cambridge. Right from day 1 the specialists have said he's kind of got parkinsons, never really committed 1p0 percent as always showed some signs etc. So no not a straight forward case. But have seen other examples of huge differences from 2nd opinions. Just want to make him as well as he can at this stage of his life and hard to get people involved Ed that we know we've done as much as we can.

Thanks. L

[Kevin_1 in reply to LeighWoodward]

Hi

I have heard this guy speak. He seems very good. Quite a few folk here are under his care and are very pleased to be so.

cuh.nhs.uk/neurosciences/wh...

He does research into PSP too at The Neurological Centre in Cambridge. (Part of the University).

Yes, I wonder if your GP is dragging their feet because it is an extra cost. CCG's are trying to cut these referrals down.

Has no-one done an MRI Scan?

Hope this helps a little.

Best

Kevin

pspassociation.org.uk/2017/...

[JA10 in reply to Kevin_1]

Professor Rowe is my Mum's specialist, I always feel that excepting this site, what he doesn't know about PSP isn't worth knowing. We see one of the team for most of the appointment then Dr Rowe will come in re-do a couple of the assessments, ask mum and I a few questions and then talk through the situation and then say what needs to be done with regards changing her current prescription. He is really good, we were lucky in that Addenbrooke's is our closest hospital so we got him as our neurologist, straight to diagnosis to, due to mum's first symptom being the falling backwards unexpectedly.

[Hidden]

Larry was first diagnosed with Parkinson’s which got changed to Parkinsonism then PSP. A movement disorder neurologist might be the way to go to refine the diagnosis if you suspect it isn’t only Parkinson’s.

As for loopy thinking the more tired he is the greater the loopy thinking.

[honjen43]

Hi Leigh, I agree with all that's been said. Maybe someone in UK can suggest one who has been particularly helpful

My husband was diagnosed with Parkinsons and had symptoms some years before his GP suggested it. Final diagnosis was CBS after I insisted that his symptoms and deterioration did not fit the general pattern of Parkinsons. My love had MRI scan that found a small tumour on the temporal lobe. After admission to hospital because of fast onset muscle deterioration when he suddenly could not walk, sit or stand alone, I requested a neurologist. He determined the CBS.

In my observation of my love's journey, I note he was generally at his best at breakfast, when he could eat cornflakes, drink, converse, and act with apparent intelligence (according to his Ward team leader). However, by lunchtime, after the ward rounds had finished and the physio had been, he was extremely tired, and often could not feed himself, drink or make much conversation. On occassions he was also confused and seemed to be in another headspace. Even after a sleep, normal behaviour did not generally resume until the following day, although sometimes in the early evening he was right with me!

So agree with you that a neurological assessment may get to the bottom of the mind and mood changes your dad is showing.

Keep at the GP, keep Googling and keep in touch here. Above all, keep battling to get that second opinion which it your right to ask for!

Even ask to see another GP if you know of one who may think outside the Parkinson's 'square'. A similar 'square' that includes rare diseases like CBD, PSP, and others, is Parkinson's Plus!

Big hugs!!

Jen xxx

[Katiebow]

Definitely need to see a movement specialist, we saw a Dr Romi Saha who was so kind, but he practices in Brighton for NHS and nearby private hospital ( we saw him at Gatwick Spires) he is one of the consultants involved in the PROSPECT trial and there are others dotted around the country who have special interest in PSP and related diseases. Hope that helps

Love Kate xx

[LeighWoodward]

Thanks all for your time in commenting. I will look into all a d pass on to my family to look into also. Much appreciated as always. Leigh.

[MaureenHorne in reply to LeighWoodward]

G

[raincitygirl]

I agree that a tertiary neurologist is required. They could consider CBS/CBD which can have a dementia element, and can consider Dementia with Lewy Bodies - another disease under the fronto-temporal disease umbrella

Best of luck Leigh!

[Dickenson2]

We are under Professor Rowe at Addenbrookes in Cambridge. He is excellent and involved in lots of research x

[pongo1234]

We are under Prof Hugh Morris in London he is very good .

[MaureenHorne]

Good Morning, Leigh,

I would fully support the recommendations already made , namely Professor James Rowe @ Cambridge and Hugh Morris @ Queens Square London. Both are eminent, world class neurologists who know whatever there currently is to know about PSP & CBD and they and their teams will be among the first to learn of and implement any potential new and hopeful treatments.

I am the co-ordinator of the Hertfordshire PSP/CBD Support & Friendship Group and a number of the members of the group ( who come from as far afield as north London and Bedfordshire as well as Herts) are under the care of James Rowe or Hugh Morris ( often as a result of tertiary referrals) and speak highly of each. I always strongly recommend new members to be persistent in seeking such tertiary referrals as you can be sure of a very thorough assessment and possibly the opportunity to take part in clinical research and or trials.

As you are in Northants, James Rowe is probably the most convenient for you and I can assure you he's not only a top neurologist but also a lovely , very approachable man . You're also near the the HQ for the PSP Association in Towcester whose Helpline may be useful in advising you about seeking the tertiary referral....but don't be put off by P GP reluctance .

Good luck!

[LeighWoodward in reply to MaureenHorne]

All noted, many thanks. We have been speaking to Towcester PSP. Part of the problem though is my mum doesn't want it to be PSP and is in the middle of doing a bungalow up to help with dad. It's all a bit chaos. But I've passed all your advise on via our family WhatsApp chat so hopefully we will get things moving. Many thanks for taking the time to reply. It's much appreciated. L