Good Neurologist

[Daisies22]

Hello,I was wondering if anyone could recommend a good Neurologist.

I would be grateful for any suggestions you might have.

Thank you in advance.

[park_bear]

Hi Daisies - Are you wanting a neurologist in some particular geographical area, or anywhere in the UK ?

[Daisies22 in reply to park_bear]

Hi park_bear,Thank you for your quick response!

Anywhere in the UK will be absolutely fine provided they genuinely listen to the patient and are willing to work with them.

So far I have not had much luck in this respect.

I am happy to be seen as a private patient too.

D.

[pearlette in reply to Daisies22]

What are the questions you want answered ? Is it movement disorder related ?

In the UK it is usually better to have someone geographically closer to you. That helps with any additional support like physiotherapy, occupational therapy.

If you can give some idea I maybe able to help.

(worked as a physician in the UK in many regions since the 90s.

[Daisies22 in reply to pearlette]

Hello pearlette,

Thank you so much for responding to my post, I was already losing hope that I would get a reply.

Yes, it is movement disorder related - five years ago, at the age of 49 I was diagnosed with Young Onset of Parkinson's disease.

And, yes I am looking for answers to simple questions: e.g. Why the anti-Parkinson's medication I've been prescribed, Madopar & Pramipexole which in a year was replaced by Rotigotine patches, has a truly detrimental effect on me. My reaction to dopaminergic medication is so extreme that every time I take a dose of Madopar we consider calling an ambulance.

Ultimately, I would like my case to be looked at again as there are a lot of red flags there...

I have never been referred to physiotherapy, and we feel that we are left on our own devices - with no meaningful help or guidance on part of the Neurology Department and my own Neurologist.

Any information and advice would be appreciated..

Thank you again.

[pearlette]

Hi Daisies22

I am sorry for taking time to reply . I was a tied upwith a lot of stuff.

When did you start having symptoms ?

What led to your seeing a neurologist.

Is your neurologist a movement disorder specialist ?

Who prescribed the Madopar ? Was it done after a neurologist saw you ? Or was it prescribed by someone else on the advice of a nerologist in the interim

What about the pramiprexole ? What made some one start that drug ?

What led to the change to Rotigotine patches ? Did this follow an A&E attendance when you felt "unwell" after Madopar ?

Do you see a neurologist at regular intervals ; could you be one of the casualties of the Covid pandemic who has no follow up

Not knowing wha your symptoms are I would not know where to start.

I dont know whether you have been unfortunate to have an indifferent clinician or whether you were not able to approach them due to the circumstances

I think you should write a letter to your neurologist and copy your GP into it explaining that you need some assistance in understanding your condition.

If there is the option of a Parkinsons specialist nurse in the department , request that you are referred to one. They serve as a good access point to neurology departments.

The neurology department should also have a pharmacist wh can spend time explaining how your medicines work and interact

See if you have a local Parkinson UK group for YOPD.

There is also a lot of information that can be available online about medication (The Davis Phinney foundation have excellent presentations on You Tube.

Everyone is not automatically referred to a physiotherapist. If your mobility is not significantly impaired , can you exercise. Basically you can do any exercise you are capable of doing safely.

See if you can get better engagement locally first.

If you have already tried and hit a brick wall , then you can ask your GP to arrange for a second opinion. You can also fin dyour own second opinion privately.

The web based service specialistinfo.com is a paid service . You dont need a subscription. You can pay a one off fee of less than £10/- an dget access for 24 hours to contact infomation for every specialist in the UK.

Most others are mere advertising sites

PIck someone closer to you;create a shortlist and you could ask on this forum about people's specific experiences.

To choose a specialist for someone else is difficult.

Think of how carefully we select a builder to do some major work on your home. Use the same approach to find the right doctor for you.

If you still find you cannot choose , let me know and we can try to get a better understanding of what would help you.

There are a few on this forum who have had private opinions. I live in the London area but I have stayed away from the big names that many of my colleagues recommend.

Good luck