looking for a neurologist

[etchea33]

Can anyone recommend a neurologist knowledgeable in RLS in the Bristol/ Bath (England) area ?

I currently have a neurologist whom I rate quite highly but who cannot prescribe opioids as they are not on the formulary of the hospital where she practises. She has however asked my GP to prescribe Oxycodone and I have been on Targinact, and now Longtec , 3 times a day for a few weeks. It has been working well during daytime but does not cover my symptoms 24/7. I have discussed with my GP going onto Buprenorphine and she would be willing to prescribe it under the guidance of a neurologist. She has agreed to do some research and for me to do the same.

The two names I have found here are Dr Jose Thomas in Cardiff and Professor Walker in London, both of whom sound very good. Does anyone know of any other? Many thanks in advance .

[Fletch_F_Fletch]

Here's something I recently found and am trying to work up to the full list of recommendations. RLcure.com Maybe it's something to investigate, while you search for another neurologist? Good luck.

[etchea33 in reply to Fletch_F_Fletch]

Thank you very much Fletch_F_Fletch. Certainly a lot to ponder there!

[Fletch_F_Fletch in reply to etchea33]

My pleasure, etchea33. As you noted, there's certainly a lot there to consider. I'm not a fan of the word "Cure" in the title, but the protocol seems to help some. I'll believe it when I feel it. Or, rather, when I don't feel anything! Wishing you the best of everything.

[SueJohnson]

Dr Robin Frackrell at the Royal United Bath NHS Foundation Trust at Sulis Hospital Bath. He will prescribe opioids.

[etchea33 in reply to SueJohnson]

Thank you very much Sue. I had not come across him before. Will look him up.

[Huntingleroy in reply to SueJohnson]

And so will Dr Roswell Martin who works Cheltenham nhs and Gloucester privately

[Kaarina Administrator]

There is a Dr Robin, Keith Fackrell recommended by forum member Dotmowatee in 2022. ..... You could send her a private message to learn more about him? He is based at Royal Circle and Royal united, Bath.

[etchea33 in reply to Kaarina]

Thank you so much Kaarina. Very helpful. I will message Dotmowatee

[Huntingleroy]

There is Dr Robin Fackrell but not a great believer in augmentation and kept upping my dose of 4mgs.Apparently dr thomas cannot prescribe as he is welsh and presume you are English . Good luck . Im using Dr Roswell Martin in Gloucester

[Kaarina Administrator in reply to Huntingleroy]

I believe davchar23 recommended Dr. Roswell Martin at Winfield Hospital, Gloucester too.

[etchea33 in reply to Huntingleroy]

Thank you Huntingleroy. It is great to have first hand information. Bath and Gloucester are possibilities for me.

[Huntingleroy in reply to etchea33]

Happy to help . I personally didnt find either of them great and £260 for a phone consult ...no thank you ! Dr Martin actually listened to me and I had also sent him my complete history before he saw me which helped . I think really he specialises in MS so I suppose I ended up feeling that I knew more about RLS than he did . He did prescribe Targinact (on wrong colour pad so had to go back next day !)Im still struggling at night and seeing him on Nhs now in April . I have however emailed his PA and apparently I have a letter in the post so watch this space ! Good luck

[etchea33 in reply to Huntingleroy]

I suppose all these neurologists have conditions such as Parkinson's, MS, Sleep disorders, epilepsy, etc. as their main area of practice and RLS comes after. I would be interested in what he says when you see him in April, if you're happy to share, as I also struggle at night and rarely get more than 3or 4 hours' sleep. Is Targinact available where you are ? I was on it in January and got on well on it but when I went for my repeat prescription I was told it was out of stock and there was a supply issue. Still is.

[Huntingleroy in reply to etchea33]

Yes i take 5mgs Targinact at 10am and Im trying 10mgs tonight .I cant take 10mgs in morning or im like a zombie ! Ive also got some Zopiclone 3.75 mgs sleeping tabs today but only allowed 3 a week !! I can go to a higher strength in couple of weeks . I had 2 hrs last night so Im shattered

[Dotmowatee]

I saw Dr Robin Fackrell privately at The Circle hospital Bath and found him very helpful. He agreed that I must come off pramipexole and wrote a letter to my GP suggesting that I have an iron infusion and to be prescribed targinact, which works for me. My local neurologist at Plymouth was hopeless, I eventually got an apology. Good luck.

[etchea33 in reply to Dotmowatee]

This is very helpful. Thank you Dotmowatee, and everyone who responded. Where else but this great forum would I find such invaluable information ? I can now go back to my GP and continue our conversation about switching from Oxycodone to Buprenorphine when the time is right. Another question for everyone: How do you go about consulting one of these neurologists? Do you contact them personally or via your GP?

I assume it would be a private consultation? Do you then at some point go back to the care of your GP ?

Thank you everyone

[pianoplayerPLMD in reply to etchea33]

Hi, Dr. Jose Thomas works at the private Spire Clinic in Cardiff: funnily enough I was there myself yesterday, to see him for my RLS/PLMD. He is very good, very thorough.

[Dotmowatee in reply to etchea33]

I contacted them myself and the conversation was forwarded to my GP by letter . Incidentally, after my dismal consultation with my local neurologist I also emailed Dr Mark Buchfuhrer( spelling) in the USA and I got a reply! He confirmed my need for opiods and I forwarded this to the local neurologist.

[Huntingleroy in reply to etchea33]

You will need your Gp to refer you to neurologist of your choice. If you can get their email it speeds it up a bit .

[Huntingleroy in reply to Dotmowatee]

How long ago was this ? My appt was around covid time and he just would not accept augmentation despite the fact it had spread to my arms and I was pretty much restless all day Stupidly I let him put me up to Ropinirole 4mgs !!! Anyway we dont talk about the R word anymore , FINALLY got off them last November and just need to sort night time . This site has been my life saver and thank you everyone

[Dotmowatee in reply to Huntingleroy]

I saw him about four years ago and he told me that I needed to come off pramipexole with the help of targinact. I'm really surprised with the advice he gave you. Glad you managed to withdraw, I'm still finding it difficult.

[Huntingleroy in reply to Dotmowatee]

Hence why you are awake ?! Ive had 3 hrs sleep now eating a bowl of cereal , late night eating is a problem sadly !

[Dotmowatee in reply to Huntingleroy]

Have suffered from insomnia since the menopause and pramipexole hasn't helped. Hate the drug, always hungry. Lucky if I get four hours broken sleep.

[Huntingleroy in reply to Dotmowatee]

Yes I hate Ropinirole and what it has done to me . Im always snacking at night which is last thing i need . Take care

[pianoplayerPLMD]

Sorry, I meant to add, I contacted the clinic myself, in answer to your question. Dr. Thomas asked me straight away if I wanted him to send the written account of our meeting to me or to my GP. Obviously I said to me, but I will be seeing my GP in 2 weeks and will show him the account.

[etchea33 in reply to pianoplayerPLMD]

Thank you very much pianoplayer. Presumably Dr Thomas gives you a diagnosis and a treatment plan and you go back to your GP for prescriptions as relevant ? I'm not absolutely sure how the system works.

[pianoplayerPLMD]

Yes, that's what he led me to believe; it hasn't arrived yet. He took a great deal of notes, and it seemed like a proper grown-up conversation about my RLS, the first I've had for the last 6 years.

[etchea33 in reply to pianoplayerPLMD]

Thank you pianoplayer; he sounds very good. I hope you get a satisfactory solution to your PLM.