Neurologist

[Keith1231]

This afternoon at 3pm I have a last minute appointment with the neurologist due to a cancellation. I want him/her to prescribe buprenorphine and or dipyridamol but what do I say if he/she refuses? As you may know I have tried most things. Any advice would be most helpful.

[Joolsg]

Difficult. Buprenorphine works well for refractory RLS. Dr Borreguerro points out that dipyradimole doesn't work so well for patients who augmented on DAs.Show the neurologist this study by Dr Berkowski on Buprenorphine.

And tell him to look at this site to see the many refractory RLS patients who are now RLS free and have NOT developed tolerance.

neurologyadvisor.com/report...

Also show the Massachusetts opioid study that shows tolerance doesn't happen.

massgeneral.org/rls-registry

[Keith1231 in reply to Joolsg]

Thank you. He has prescribed the buprenorphine, just got to wait to see if the hospital pharmacy will give me the meds without questioning the reason why. If they won't then I will have to wait for the approval by consultants boss.

[Joolsg in reply to Keith1231]

Fingers crossed

[Claire_1c]

If you're not successful with this neurologist, do come back to us. We have a list of consultants who are knowledgeable about Buprenorphine and will prescribe it if all other options have failed.

Also worth getting your iron/ferritin levels checked (see SueJohnson's many posts on this). Many people get complete relief from an iron infusion, but you won't get that on the NHS unfortunately.

[Keith1231 in reply to Claire_1c]

See my reply to joolsg. I had ferritin done a few months ago and all is good. Thank you.

[LotteM]

Would you mind sharing the name and location of your neurologist? Or is this one of the neurologists of the UK (very) short list?

[Keith1231 in reply to LotteM]

It's the Norfolk and Norwich University Hospital Neurology out patients dept. I will send you his name once I receive his letter as I cant remember.

[SueJohnson in reply to Keith1231]

Let me know too as I keep a list of doctors.

[Keith1231 in reply to SueJohnson]

Okay.

[SueJohnson in reply to Keith1231]

Did you ever get the name?

[Keith1231 in reply to SueJohnson]

Not yet. I am waiting for the consultant to write to my GP then I will have his name. It could be a few weeks for this to happen. Sorry for the delay.

[SueJohnson in reply to Keith1231]

OK - no problem

[Keith1231 in reply to SueJohnson]

The neurologist's name is Dr Muhammad Rafig at the NNUH, UK.

[SueJohnson in reply to Keith1231]

Thank you.

[Delfine in reply to Keith1231]

I saw a consultant neurologist based at the Norfolk who was called Sanad Esmail and he was brilliant. Could it have been him? He’s putting me on one of the gabas to help me get off ropinerole and doesn’t support DA prescription for restless legs. So happy and obviously very lucky.

[Keith1231 in reply to Delfine]

Yes, it could be as he is Asian/Indian. I will wait for his letter to be certain. Thank you.

[Keith1231 in reply to Delfine]

The neurologist's name is Dr Muhammad Rafig at the NNUH, UK

[Delfine in reply to Keith1231]

Thank you. And good luck 😊

[Keith1231 in reply to LotteM]

The neurologist's name is Dr Muhammad Rafig at the NNUH, UK

[SueJohnson in reply to LotteM]

see the name below

[SkyCop]

How did it go? Did the neuro write you for the Rx?

[Keith1231 in reply to SkyCop]

Yes, please read above.

[violetta254]

I really wouldn't put them in the same category. The evidence for dipyridamole is shaky at best and really wouldn't get you much, particularly if you were previously on DAs.

[Keith1231]

I have been taking Buprenorphine for 10 days now and I think it has impoved my RLS however, I am still not sleping well and the next day I am asleep on the couch, going back to bed, sleeping in car park (fully alert whilst driving) I have fallen asleep whilst eating, it took me a full hour to eat a curry that I had made, I sleep then eat a little more then fall asleep again and so on. Should this drug make me like this, it's worse than a sleeping tablet. What should I do? I am taking 0.4mg at night but I can go to 0.8mg if required, I am reluctant to increase because of the daytime sleeping? Thank you.

[amrob123 in reply to Keith1231]

If it provides sufficient coverage for your RLS, you could go down to 0.2mg until your body gets more used to the drug?

[Keith1231 in reply to amrob123]

Thank you. I will try that tonight.

[Keith1231]

This an update on my 'Neurologist' post above from two months ago:

A few months ago, Dr. Rafiq prescribed a small dose of Buprenorphine to address my RLS symptoms. Unfortunately, the medication didn’t bring the relief I hoped for—in fact, it left me feeling excessively drowsy the next day. I communicated my concerns to him via email (facilitated by his helpful secretary), and he responded swiftly.

During a prior discussion, I had mentioned Dipyridamole, an antiplatelet drug, as a potential treatment for RLS. Dr. Rafiq took this seriously and followed up with a phone call to explore the idea further. While he was willing to prescribe it, he had to consult the medical council due to its off-license status for this condition.

Yesterday, he called me with an update: unfortunately, the council declined the use of Dipyridamole for RLS. However, he had already planned the next step forward. He informed me about a consultant from Cambridge who holds a monthly clinic at the Norfolk and Norwich University Hospital and arranged for me to see them before Christmas.

I’ll keep you updated on what happens next, but for now, I’m immensely grateful for Dr. Rafiq’s dedication and persistence.