Looking for an expert, (with a cure!!!! :) )

Hi all. I have been suffering with RLS my entire life and have yet to see a Dr that fully understands the detrimental effect on life and livelihood, social well-being and the pain and trauma of chronic insomnia.

I went private to a Dr Weir to help with ME and was delighted to speak with someone who knew what was what and able to give advice that worked, (other than avoid alcohol and caffeine).

Does anyone know of a well respected Dr who is knowledgeable of restless legs? If at all possible the name of an Irish one, (or one based in Ireland to be precise), or a British Dr that does clinics in Ireland - Dr Weir is based in Harley St but he does clinics on occasions in Belfast.

Anyone any ideas?

Thanks for reading and any replies.

23 Replies

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  • When you find the doctor with a cure, then let me and everyone else know on this forum. :D

  • You a right sarky mare!!!! :p

    If I can get someone to take me seriously that understands the desperate damage to a person this condition does, (my GP says he gets a bit of it now and again so understands - I wonder how many times he wished he was dead due to pain, exhaustion and a complete inability to sit at peace!), I'll take that while I await the cure.

  • LOL.!!! Sorry i just couldnt help myself. :) The trouble is raff, even if you find a doctor who DOES have a good knowledge of RLS, i expect they would only recommend the usual meds that are available for RLS. There hands are tied so to speak. They cant perform a miracle, altho i wish they could. I am sure you have tried all that is out there. Like most of us have. I also struggle sometimes, buts thats because i am so sensitive to ALL the damn meds. Drives me nuts..! :)

  • Ah no I do understand that I wont find that miracle cure but I suppose I would like someone to say to the GP - you can and probably should mix and match the medications and that the patient (me in this scenario) knows what they need.

    I see on here people taking 2 or 3 different meds at low levels to treat this, with my Dr its just you try one thing and if doesn't work move to the next and when they've all failed give up!

    Its so vital that I get this under some sort of control as I've been diagnosed with ME I have to avoid the things that set off the ME, the RLS being one of them - when its bad, ITS BAD. At those times its at the upper end of this RLS scale -

    medicine.ox.ac.uk/bandolier...

    So with that all in mind I am clutching at anything that might help. Desperate times call for desperate measures!

  • It's pure hell - and try this.... Do a amazon search for RLS, you'd be amazed what's on Amazon alone!

  • Ah right, i understand now , you need to tell your doctor that this condition can be treated by using 2 or 3 different classes of med at low doses which can work better than just one med. I have said to my doctor that i am doing just that, he didnt question me. I had the meds here already, so i tried two along side each other. Also i guess you have to be careful that what you take doesnt interact with any meds you take for your MS. raffs, i thought you had worked out what worked for you, the Kratom. Is the patch helping at all.?

  • Trying to stop the Kratom, so I'm down to 2/3 dose and I had thought the patch was working but I ran out for two days and now things are quite bad - it seems if I don't keep on top of it it runs away with itself. Also I'm in more pain as the Kratom was helping with that also.

    I'm starting to think I should just stick with what I know instead of trying to rely on Drs :(

  • Stopping the patch you are probably having withdrawals, you were having dopamine and now that has stopped the dopamine receptors go nuts. We all have to keep on top of our RLS, missing taking a med will result in bad RLS. So, why are you stopping the Kratom. ? Can you not get some more patches if you think they were working.

  • I have the patches on again - I ran out at weekend then the chemist didn't have them in stock. Two days back on them so maybe it needs time to build up again. I have stopped reducing the Kratom til things stabilise which will hopefully be soon.

  • The patches shouldnt need time to build up in your system, they by rights should work the first night.

  • That's my fear :( I have a pain clinic appointment in a couple of months and wanted to be only on prescribed drugs to avoid any confusion - wishful thinking by the looks of it.

  • Well Raffs don't build your hopes up on the pain clinic,I know 3folks have been on that road all they said was wast of time ,if it's to do with rls what can they say different to what you know ,how is your rls going now x

  • Feeling better beady3 on the RLS front - I think I dropped the Kratom too quickly too I halved dose overnight which made things worse so I am slowly reducing and it seems to be going OK.

    Just wish my body wasn't racked with pain and I am restless although not RLS restless if you get what I'm saying?

  • yes, beady3, I agree. A pain clinic is not the first choice for RLS treatment. A sleep clinic or a neurologist who actually have studied RLS, are a better option. I go to a pain clinic for my chronic pain from my surgeries in my back and neck and other issues, so that is how my pain doctor got involved, but my GP prescribed all my meds.

  • My GP wouldn't prescribe stronger pain drugs as I was falling asleep all the time but he prescribed the Neupro patch which lists as a side effect 'falling asleep without warning'.

    I am at the stage where I think the GP is just f**king with me he seems to have very strange beliefs.

  • how long on the Kratom?

  • Been taking it since September or so of last year am now down to 1/3 of my regular dose and doing fine - the patch seems to be holding things - for now!

  • We have all at one time or another had to take information to our doctors, especially back in the early internet days. I have "fired" many doctors in the RLS journey, and I would do anything to quiet mine down. What we wouldn't give for the "cure"! But then, I would not need support groups with way over 5000 members and they would not need the groups. Wen the cure is found someone will be shouting it from the rooftops.

  • Try this..... Pramipexol 0.7 mg. My Dr prescribed these and while they didn't work for me, they have completely stopped my son's RLS. Our neurologist here in Germany, who specializes in RLS prescribed them to me. He's put me on 20 mg Oxy and BAM! My rls is completely gone... But I don't like Oxycodon because it's addictive. If you'd like the name and Addy of my neurologist I'd be happy to pass it along.. He speaks English.

  • I'm in Ireland and I know my Dr wouldn't hand out Oxy without the pain clinic saying so OR if had cancer!!!!!

  • It is different in different countries, and since you are in Ireland, an doctor in Germany is not too handy! lol

  • Seeing Prof A C Williams on 3ard of July at the Priory hospital Birmingham UK, watch this space will report back. hope your successful :)

  • Good luck maesllan5 with your appointment. Will watch this space... :)

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