Getting ready for appointment

[Mikki01]

Hi

I now have my official report following my nerve conduct test and all negative which is a huge relief. This rules out an nasties cusing my muscle spasms. I have my new neurologist appointment tomorrow at the walton center and I need to go in fully armed.

You have all given me great advise but all so much to take in, could someone give me ball pointer to take in with me please.

Had rls for 5 years

On ropinirole 2mg tried to reduce myslef but as I haven't got another medication I've struggled and waiting to see the new neurologist.

1. What meds should I ask for whilst weaning off ropinirole and plan of action

2. When completely off what meds do I take amount times etc.

3. If this one does work.whst can I ask for as a replacement

4. I'm on flouxine what should I ask to change to

5. I have now come of hrt

6. On strong iron pills

Thank you in advance

[SueJohnson]

I have bad news for you. I don't recommend the Walton Center because for one forum member they prescribed over the maximum amount of pramipexole which is a DA like ropinirole and then next wanted to try levodopa (sinemet) which is even worse so hold your ground and refuse them - also refuse Neupro (rotigotine).

Ask for trazodone for the fluoxetine.

Ask for a low dose opioid to help you come off ropinirole. Emphasize it is temporary so they will be more likely to prescribe it.

I gave you advise of what to take and when to take but will be glad to repeat it if you want.

If it doesn't work the last resort to is a low dose opioid.

[Mikki01 in reply to SueJohnson]

Yes I think they are all the same too be honest but this time I'm going in with a better knowledge from you guys. I will sit there and make her read the rls UK website before I leave. Yes sorry I have found the thread with it all on and noted it all down.There is no way I'm getting fobbed off again.

[SueJohnson in reply to Mikki01]

You might also want to print off the appropriate sections from the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

[Mikki01]

Seen neurologist at walton center and to be fare she listened and understood the effects of ropinirole and before I even said anything said we need to get you off that. She's done me a plan to withdraw but suggested pregabalin not gabapentin but has said we can try this then that if no joy. One I hope it works but also I cannot cope with the sedative effect of ropinirole as I'm taking it so early I fall asleep, anyone know if pregabalin knocks you out as I'm going to be on a split dose day and night eventually. I'm OK if it's just temporary but cannot be a zombie all my life

[SueJohnson in reply to Mikki01]

That's good that she listened. Pregabalin is more likely to make you sleepy than gabapentin but everyone reacts different. I assume you remember that it won't help your RLS until you are several weeks off the ropinirole and your withdrawal symptoms have settled.

You don't need to take it twice a day because once off ropinirole your symptoms will only be at night.

[Mikki01]

Yes she did confirm that, I will see how it works thank you for all your help 😊