help!

[6236]

as I have posted before I have been on Ropinorole for 20 years. I was taking 3mg but it was not lasting as long so my neurologist increased it to 4mg which has worked. But after my last post I have become concerned that since I have been on it for so long that things are going to get worse instead of better. I cannot deal with the agony that rls produces! I have gone to the RLS foundation website looking to see if there was a doctor in my area that they recommend. There is a Neurologist that they listed as knowledgeable in RLS now my question is has anyone else had any experience with this website and why are doctors not more knowledgeable about RLS?

[ChrisColumbus]

The RLS Foundation in the US is the equivalent of RLS UK here, and its recommendations should be helpful. Research into, and understanding of RLS, in the US is generally ahead of that in the UK: while there're still doctors in the US wedded to dopamine agonists as there are here, a neurologist recommended by the RLS Foundation should be au fait with current best practice. Before making the appointment, it might just be worth confirming with the new neurologist that they are aware of and follow the Mayo Algorithm. If they answer negatively or evasively steer clear!

[6236 in reply to ChrisColumbus]

I appreciate your help. I currently go to a neurologist who prescribed the ropenorole but he has offered no other options. I will ask about the Mayo Algorithm.

[ChrisColumbus]

Beyond this, SueJohnson and Joolsg amongst others Replied to your first Post about augmentation, the usual doses of gabapentin and the fact that it wouldn't work properly while you were still on ropinirole, the importance of iron etc. You should follow all their advice.

[SueJohnson]

The doctors on the RLS foundation website have been recommended by someone who uses him/her. That does NOT mean they are up to date on the latest and best way to treat RLS. They might have prescribed a dopamine agonist like ropinirole and the person was happy with that. They may not prescribe opioids which you may need. As ChrisColumbus said you should ask him/her if s/he follows the Mayo Algorithm and if s/he prescribes opioids if needed.

[Joolsg]

This is a UK website, run by RLS-UK. Here in the UK, RLS is not taught at any stage in medical training. That's why doctors know nothing about the disease or the correct treatment.

Iron should be first line treatment, before any meds.

In the US, there are actually more specialists in RLS than anywhere else. Drs Buchfuhrer, Earley, Ondo, Winkelman, Berkowski, Koo.

Hopefully you will find one of the good doctors to help you get off Ropinirole.

[TheDoDahMan]

My best wishes that you will find help as soon as possible. We care for you and want you to feel better.