good morning all
I have an appointment with the doctor at Emory in the morning and I hope and pray that this is not another dead end! But I know I have been told this before but please help me out one more time. I want to have my ducks in a row when I go in as to what questions I need to ask. Sue , Chris and Jools I know you have told me this all before but if you could give me list of things I need to ask I would greatly appreciate it!
You shouldn't have to ask any questions as he is excellent. Just tell him your experience, what you have tried and what you are taking and that you want help coming off the DA and a low dose opioid to help you do so.
If Sue says you're in good hands I'm sure you'll be fine just laying it out as she says. I look forward to hearing positive news!
If Sue says Emory is excellent, I trust her opinion. He will know what blood tests to do and how to help you get off Ropinirole safely.Good luck.
Joolsg, I wonder if you could tell me who you see in London. Also do you know which London hospitals have changed there policy of prescribing dopamine agonists as the first line treatment?
I can't recommend the person I see for RLS in London because I'm under Professor Ray Chaudhuri's team at King's College Hospital.They don't prescribe iron infusions as they won't accept the overwhelming evidence that infusions are highly effective. I was refused an infusion and told that King's couldn't do them (not true) and that Prof. Chaudhuri believes they're dangerous.
Also King's still prescribe Rotigitone to everyone suffering augmentation. Another dopamine agonist that will simply prolong the suffering.
Luckily, by the time my NHS appointment came up, the good people on here had warned me not to accept another dopamine agonist and I had been through withdrawal.
I stay on their books simply so that I can keep telling them every 6 months that I'm RLS free on Buprenorphine, in the hope that one of the more curious registrars will try it for another RLS patient suffering augmentation.
I have only come across one UK doctor who is fully up to date on RLS. Dr Jose Thomas at Gwent Sleep Clinic. He follows the latest research and stopped prescribing dopamine agonists around 7 years ago. He treats with iron infusions first, before prescribing meds.
There are a few other doctors who are now aware that dopamine agonists are a problem, but there are still too many who mistakenly believe they're fine, if the dose is kept low. Again, we now know from this site and the top experts in the US, that even a tiny dose of dopamine agonists can cause augmentation.
I've spoken to a few MS neurologists at my hospital, St George's in Tooting, and at Bart's in London. They now prescribe pregabalin or gabapentin as first line treatment.
It's definitely worth speaking /writing to your local MS neurology team before making an appointment to see a general or Parkinson's neurologist. Parkinson's neurologists tend to overprescribe dopamine agonists, because they're used to high doses for their PD patients.
Ask in advance how the doctor/neurologist would treat RLS and augmentation.
Thanks for this Joolsg. It's a bit of an uphill battle isn't it? I've had RLS for 15years. I think it must be getting worse because Pregabalin seems not to be as effective, I have to bounce and jiggle my legs around all evening. I still haven't had my iron levels tested so I need to pressure my GP to get that sorted. I wonder if I could persuade my GP to let me try buprenorphine, is there any research I could use?Thank you so much for all the help and support you give to this forum, it would be a lonely illness to bear without you
Buprenorphine is 'red listed' in some UK prescribing areas. That means only a specialist can prescribe and monitor it.I was lucky; my GP agreed to a 3 week trial. As it worked 100% the first night, she put it on repeat.
There are no UK studies, but Dr Berkowski, in the USA has done a study. There is also the Massachussetts Opioid Study and register by Dr Winkelman at Massachussetts General Hospital.
Show your GP both links and ask for a trial.
If your GP refuses full iron panel blood tests, show them the post on here by Switalskis, solicitors. It is now clear that failure to take bloods and correct iron levels is a breach of duty under UK law, and your GP can face legal action for negligence.
researchgate.net/publicatio...
I hope your GP listens, learns and starts to help you. Raising serum ferritin above 200ųg/L may settle your RLS.
If not, a switch to Buprenorphine would be your next option. Dr Buchfuhrer and others have realised that many RLS patients do NOT respond to pregabalin or gabapentin after years on dopamine agonists. If you were on Ropinirole or Pramipexole, it probably explains why pregabalin is failing. That, and/ or low brain iron.
Which doctor are you seeing at Emory? I saw Dr. Rye and he was AWESOME, but it is my understanding that he has retired. There are other neurologists/sleep doctors in that group, though.
He's still there just not taking any new patients at this time.
He's focusing on research and not only is he not taking any more new patients, but he has stopped seeing his other patients, too.
Stopped prameprexole and need help
need help!!
Sifrol withdrawal, need Help Please. 
Help needed 
