Is there a specialist in the uk for RLS?

[JenniferG]

My doctor is useless and doesn'tseem interested in my condition they have told me that they will not refer me onto anyone for my rls. Is there anyone in the uk that specialises in RLS? I'm happy to go private.

[Tiredparent Restless Leg Syndrome]

Yes there are some but there is no official list. Some neurologists seem to have good RLS knowledge and others don't! Can you let me know roughly where you are in the country so that we can try to give you someone near you. When I struggled to find a specialist locally I had to convince my GP that that was the case and he had to put forward my request to some sort of funding body to see someone outside my geographical area (Professor Chaudhuri and his team in London). It worked for me but I am fortunate to have a good and sympathetic GP. However, I think budgets have been cut since then so it may be harder to do now. I think I had to wait about 6 months for an NHS appointment with Prof Chaudhuri but far less when I went private.

[spike28 in reply to Tiredparent]

Good advice here JenniferG, but it's wrong that we get ignored like this realy

[JenniferG in reply to spike28]

I know, it feels as though nobody is really interested and you have to PROVE that you are unwell to a load of doctors that aren't interested.

[Jumpey in reply to Tiredparent]

Hi, I too would like to know of a neurologist near to me. I live near Chepstow in South Wales. Thanks very much in anticipation of your help and a happy and peaceful New Year to one and all. xx

[JenniferG in reply to Tiredparent]

hi, I'm in norfolk, thanks. If there isn't anyone local, I'm happy to go private , I think I need to have a sit down with my doctor and insist. At the moment they only diagnose over the phone so I haven't even managed to see the doctor in person!!

[Doings in reply to Tiredparent]

I was considering Prof Chaudri privately but it is £800 per visit then private prescriptions are about £99 per item. If i thought it would be of reliable help id find the money. Can you say if prof C helped you.

[HappyGreenBean in reply to Tiredparent]

Hi Tiredparent , I was going to post and ask about people's experiences with Prof C, preferably through the NHS but either or will do. Is it alright with you if I DM you to ask the questions? I don't want to detract from this thread here but also I'd like to have a good idea of him and his process etc, how you've been coping since seeing him etc. Let me know, thanks! And, hope you're doing well

[involuntarydancer in reply to HappyGreenBean]

I believe Joolsg also sees Dr. Chaudhry and it might be worth getting in touch with her for her experiences.

[HappyGreenBean in reply to involuntarydancer]

Thank-you so much. Is there a way I can find this person? I'm not sure how to find people through here. Thanks again.

[involuntarydancer in reply to HappyGreenBean]

If you click on healthunlocked.com/user/Joolsg this will take you to Joolsg's page and you can send her a private message. She is incredibly generous with her time and will certainly share her experiences about Dr. Chaudhury. She may also be able to give you an idea of how to get a referral to Dr. Chaudhury.

I would suggest that you take time to read widely on this forum about RLS to educate yourself about the condition and its treatments. Even apparent experts tend not to know a huge amount about RLS and often make recommendations that can ultimately result in further suffering. You will learn loads just by reading the posts on here and you may find that you can use that information to help your GP to afford you the treatment you need rather than going to a neurologist. Many people report that their neurologist does not know all that much about RLS. For myself, I have found that by reading around the forum and looking at the various studies referred to I have become more knowledgeable about RLS than my sleep consultant was and I now refer my GP to the latest studies so that we can work together to find the best form of treatment. For example, it is very important to get your serum ferritin checked, get the actual number and if it is below 100 start an iron supplement. Some people find that by raising their iron levels their symptoms resolve.

[HappyGreenBean in reply to involuntarydancer]

Hi!

Thanks so much for your kind and detailed reply. Sadly, I'm at a troublesome part of my journey. I've been through it all. I can no longer take oral iron supplements as they've rotted my stomach and I now how ulcers and other issues. I've tried the gaba pills, no luck there as I'm allergic to them. My GP isn't supportive. They've said there's nothing else they can offer in terms of treatments/meds and in truth, they're right. There's the higher grade pain meds or dopamine. Both of which they've said they won't prescribe me because they won't read the research from John Hopkins (because we're not in the US) and they've said I don't have Parkinson's so there's no need. My GP has actually told me this past week that I should just choose between RLS and gastritis, barretts. So, one can lead to cancer or lesser serious issues (I'm already experiencing) and the other is no sleep. I'm stuck. Grrr!

If you'd like to point me in the direction of some helpful posts, that'd be mighty kind of you. At this stage, I think it would be best that my GP gives up and just refers me.

Aside from what's detailed here (hopkinsmedicine.org/health/... & (hopkinsmedicine.org/neurolo..., are you aware of any other treatments and research that I may have missed?

How are you managing now? Are you on any treatments that you're finding relief with? Any lifestyle interventions?

Take care and hope your legs aren't giving you grief!

[Greenleaf360 in reply to HappyGreenBean]

Google mayo clinic restless legs algorithym

[m1946]

That's ridiculous! Your doctor should refer you to an NHS neurologist as my doctor did (Southend Hospital)

they regarded my RLS seriously

[Arkangel in reply to m1946]

Do you know if there is still a RLS specialist in Southend? I live in Grays and would go privately if necessary

[m1946 in reply to Arkangel]

Hi I was referred to a neurologist operating at Southend General hospital by my doctor. He obviously was very much aware of RLS and prescribed Ropinirole. Since then (about 5yrs ago) I am still on Ropinirole dose 0.50 mg but take one Tramadole 0.5mg as well both at about 7pm in the evening. Job done. Hoping never to experience augmentation!!

[Greenleaf360 in reply to m1946]

Ropinerole will cause you to augment. You can enjoy the relief until augmentation arises. You will want to learn the signs and be prepared to quit.

RLS-UK.ORG should have a description of augmentation.

[Gmc54]

I would seriously consider changing doctors. This condition is so life altering it needs taking seriously.

[Mundesley]

My GP refered me to Mr Lee, a neurologist, at the Norfolk and Norwich. He was really good, took it seriously, made loads of recommendations and wrote to my GP to tell her what to do. Change GP's!

[JenniferG in reply to Mundesley]

Super. Norfolk and Norwich is local to me so I will ask my doctor to refer me to Mr Lee, did he carry out many tests? We're his recommendations any good? I'm really looking to find the root cause of the problem as everyone else is I'm sure. I'd like to be off the meds.

[Mundesley in reply to JenniferG]

No, he just asked me about my symptoms, severity and frequency. He did tap my knees and legs with that hammer that they have to test reflexes. He then explained and wrote to my GP and me about a number of options increasing in drugs/ doses etc to be followed. He also said that if none of that worked I could be referred to a Sleep Unit at Papworth which specialises in RLS. If you'd like to chat, send me a PM on here.

[bmakla54]

My neurologist gave me gabapentin for my RLS....which worked sometimes and not others. After a period of time I realized it was sugar that caused my RLS at night. I now do not eat sweets or drink wine after dinnertime and I have not had RLS since beginning this habit. So for me there are triggers.....hopes this helps for others like me

[Hidden in reply to bmakla54]

YES, I agree, you are definitely on to something. I don't understand the mechanism behind what you say, but I know the same is true for me. Wine, dairy, sugar, sometimes even Advil seem to trigger RLS. Of course anti-histamines and anti-depressants are just RIDICULOUS with the way they trigger symptoms. And there is something to be said for keeping food moving along the GI track and not to go to bed with a full stomach.