Should I cancel my neurologist appointment?

[MrVimes]

After waiting over two years since being referred, I have an appointment with a neurologist.

With the help of pregabalin and opioids, I took my last dopamine agonist last July after being on them for 22 years. My life has changed; I can read a book, watch TV and sleep!

Reasons to keep the appointment: the neurologist may suggest something new to help me. However, I am familiar with the Mayo Clinic Algorithm, I think I have had all the relevant blood tests, I read and learn from posts on this forum, and I have a GP who understands. What more could a neurologist offer?

Reasons to cancel the appointment: Firstly, after more than 30 years of suffering, I have a system that works for me; I am fearful that the neurologist may overrule my GP and insist I stop taking one or more of my medications. Secondly, if I truly do not need the appointment, it would be right for me to free it up for someone who does need it.

Does anyone have any views or recommendations on the above quandary (I live in the UK)?

[Madlegs1]

If you are happy with your current treatment, and --- more importantly, trust the continuation of your present doctor ---

Then Yes.

[MrVimes in reply to Madlegs1]

Thank you. Yes my risk with cancelling is if my current GP moves on and her replacement has different views on my medications. If I can get a neurologist to approve my medication, then the risk of a future GP having alternative views is reduced.

[Joolsg]

Good points! You will know as much as your neurologist about RLS. It's HIGHLY unlikely that a UK neurologist will be aware of any new medications or treatments. For a start they don't have the time to read all the latest research alerts.Most will not even be aware of the Mayo algorithm or that the AASM issued new guidance in September 2024 relegating dopamine agonists to 'end of life scenarios'.

So you have 2 considerations.

Cancel and stick with your current regime as it's working well.

Or, take the appointment and use it to 'update' the neurologist on what is working for you (& others on here) in the hope it may prevent him or her prescribing dopamine agonists to some poor sod who is unaware of the inevitable augmentation and the high possibility of gambling house, savings away.

[MrVimes in reply to Joolsg]

Thanks, Jools. Your final point is well made and one I had not considered. The risk for me is with the individual him/herself and whether they are interested in listening, or consider themselves above a 'layman' educating them. My appointment is not for a few more weeks and so I will ponder this input along with any others I may receive before I make my decision.

[SueJohnson]

I would cancel it and not take the chance "the neurologist may overrule my GP." Unless your GP is near retirement age, I wouldn't worry about her moving on. And I would think any replacement would simply follow what was working.

[MrVimes in reply to SueJohnson]

Thanks for the advice SueJohnson. Much appreciated. My GP is young, so a low risk of retiring soon.

[Gmc54]

out of curiosity can you tell me what opioids your gp has prescribed please?

[MrVimes]

Of course. I am taking 25 mg of a morphine sulphate medication. Brand names MST Continus 5 mg and Zomorph 10 mg. The 5 mg are in tablet form and the 10 mg are capsules. The Zomorph is cheaper for the NHS than the MST, but does not come in 5 mg sizes.

[Delilah162]

Hiya, I would definitely go. I was settled at the time of my neurology appointment on pramipexole. However that soon changed. Because I'd had my initial appointment the neurologist he put me on a 3 year patient initiated self referral pathway. Which meant I could get appointments without the 12 month waiting I had had. I then used this to see him again and have been seeing him regularly since August and have now been prescribed Oxycodone.It's kind of you to think of other people by giving your appointment up. But it's not like you haven't waited long enough for it.

I just don't really see it doing much harm.

Your Dr's practise might be better than mine but having so many differences Dr's with a high turnover of staff the neurologist letters help me fight my corner for the appropriate treatment.

My neurologist knows all about RLS. Org and the advice and support I've received from everyone on here.

[MrVimes]

Thank you for letting me know your experiences. The 'fast track' back to a neurologist is a good point along with the fact that GPs do change regularly for most of us in the UK. So, having a neurologist backing up my medication, provided it is the right medication, would be very helpful. It is unlikely that I will be seeing the same neurologist as you, but just in case - I live in Wiltshire, England. If you happen to live in the same location, could you let me know so we can explore further the likelihood of me seeing the same person.