L dopa

[Bryanforever]

I'm seeing a neurologist this month after waiting for 6 years! In his letter to my Gp in response to the referral, he was suggesting l dopa. I'm guessing this is yet another dopamine agonist and wonder if anyone has experience of it?

[Joolsg]

Run. NOW.LEVODOPA has the highest rate of augmentation of ALL dopaminergic drugs & hasn't been prescribed for years!

Who is this dinosaur??.

[Joolsg]

There are a few decent neurologists around. Where are you? Maybe we can direct you to a neurologist who has actually read some research from the last 5 years.

[Bryanforever in reply to Joolsg]

Hi Jools. I'm in Essex and will be seeing Dr Lucy Coward I believe, at Southend hospital. but not certain! I guessed as much. With that drug. Not much hope for me then!!

[Joolsg in reply to Bryanforever]

Refuse point blank. And have print outs of Mayo algorithm and AASM guidance and NICE cks guidance which makes it CLEAR that when patient has augmented the doctor must help the patient get off dopamine drugs and onto pregabalin/gabapentin.And print off Iron Therapy and Withdrawal Schedule from RLS-UK website.

If this neurologist does suggest Levodopa and doesn't recommend a slow withdrawal - please consider legal action because that is extremely dangerous, negligent advice.

I have details of a lawyer who wants to bring a test case against a UK doctor for failing to warn of the extremely high risk of augmentation and refusal to help patients onto different meds/treat with iron therapy .

[Oscarcat63 in reply to Joolsg]

Hi Jools, When the outcome of the case is known, could you share with us here please ?

My rls is now controlled with pregabalin, but my gp suggested if pregabalin stopped working, that either pramiprexole or L Dopa would help - He didn't push the issue (I'd refuse anyway), and I really do not wish to find yet another gp, as this one is quite happy to prescribe diazepam within reason.

I would just like to arm myself in advance. Ta 😃!

[Joolsg in reply to Oscarcat63]

If and when it happens- I'll definitely share.How utterly depressing that your GP is suggesting L Dopa or Pramipexole.

[Oscarcat63 in reply to Joolsg]

I know ! *sigh

[Joolsg]

And there are two neurologists in London who would help you get off dopamine agonists.Professors Matthew Walker at UCL anc Guy Leschziner at Guy's.

[Bryanforever in reply to Joolsg]

Thank you. Can I ask for a referral to one of those Neurologists or would I have to see them privately do you know?

[Joolsg in reply to Bryanforever]

You can definitely ask for a referral. Waiting lists vary enormously- so try calling to find out who has the shortest Waiting list.Private fees are around £350.

[Bryanforever in reply to Joolsg]

Thanks so much for your advice. Will post when I've seen the Neurologist with the outcome.