Recommendations for RLS treatment in ... - Restless Legs Syn...

Restless Legs Syndrome

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Recommendations for RLS treatment in London please?

jazzystel profile image
11 Replies

Hi, I'm new to the forum and have a couple of questions:

1. Can anyone recommend any clinicians in the London area who specialise in treating RLS?

2. Has anybody had any experience of treatment for RLS from either Osteopathy, Accupuncture or any other alternative therapy? If so, could you recommend anyone in the London area?

Many thanks.

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jazzystel
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11 Replies
jumpylegs profile image
jumpylegs

I do not live on mainland UK and cannot recomment anyone in the London area.

I have never heard of osteopathy helping rls and have tried acupuncture myself without success.

Personally, I have found that a good GP is as good as any 'expert/clinician' if the GP is willing to learn and to work with the patient. The RLS Foundation has some excellent brochures that are excellent guides to treatment of symptoms.

Good luck.

jazzystel profile image
jazzystel

Ok I will look for the brochures. Many thanks for your response.

hi, personally speaking, ive tried most of the alternatives, and none work for me, as RLS is a neurological condition, i didnt think they would, but when we are desparate, we try anything, some say they have had some relief from natural treatments, but nothing helped me

nightdancer profile image
nightdancer

Osteopathy is not going to help RLS. I will not say never, because we should not genaeralize, byut it does not work 99% of the time. RLs has nothing to do with bones. As far as acupuncture, that is something you would have to try, BUT, again, I do not know of nayone in any of my RLS groups that have tried acupuncture and gotten more than a couple hrs relief,if at all. So you have to go back and back, over and over, and pay and pay. RLS is neurological. I cannot recommend anyone to you, because I am one of the two people here that is from the USA. I know a lot about RLS after maintaining support groups since 1997, and have had RLS since I was 14, so 42 yrs. So, I can help with treatment ideas, but not a doctr in London. Your best bet is to get a referral, if you can, to a neurologist or a sleep doctor. I know the health care system is way different than ours, so hopefully someone ere can help you wth that. Does the RLS-UK Foundation Web site have a list of health providers like the US one does (for what it is worth, the US one) Also, if you look at all the questions and blog posts, you will get some ideas. rlshelp.org is a very detailed web site ( a US one), but we mostly use all the same meds, no matter wnat side of the pond we are on. The treatment page is golden, run by an RLS expert who is a medical advisor for the US RLS Foundation. Also, see the list of "drugs and foods to avoid" That is almost, if not more important, than the meds to use. The wrong med can have you climbing the walls, literally. I have lots of UK members in my groups; most of them are here, too. :)

nightdancer profile image
nightdancer

Osteopaths work on the muscular skeletal system, and RLS has nothign to do with muscles or bones, just to be clear. It may feel like it but it is not. It is your brain telling your legs or other affected body parts what to do whether they want to or not.

lynnwin profile image
lynnwin

Hi i am new to this ,but a friend told me a excellent dr is Professor Chaudhuri he is based in Kings college hospital london .I myself have not seen him as i want to try the alternative route first .Have been taking a product called HUMET R which is full of minerals and iron seems to help .I was ill 8 years ago No one said it was RLS i went to doctor to doctor tryed having my mercury fillings replaced (detoxed) spent thousands of pounds and it did go away now 8 years on and its back my gp said it was menopause GRRRR even thou i am the age for it ,i was not happy .I saw a different gp same practice and she said RLS ,Why no one had ever said this before is a mystery ?I am having B12 injections and have just paid for a mineral and vitamin profile to be done in london BIOLAB as i take all kinds of vits etc i wanted to know where i stood ie too much or too little ?Hope this helps good luck xx lynn

jazzystel profile image
jazzystel

Thank you to everyone for your responses and the information. This is basically for my mother who has been diagnosed with RLS about 10-15 years ago (she is 72 now). She lives in Cyprus but will be over in London to visit soon and I wanted to take her to see a specialist over here to get another opinion. She's been to see various neurologists, tried all sorts of medications (oxycontin, ropinirole, etc) but apart from some minor relief in the early stages, nothing seems to help and the side effects or the drugs are not pleasant, as i'm sure most of you may know. About 3 months ago, we thought of trying other forms of treatments ("home treatments" as they are commonly referred to), i.e leg massage before bed time combined with ice on the legs, using a machine called circulation booster for half an hour a day and regular exercise. They are not miracle cures but we found that this combination has helped her quite a bit (in fact more than the drugs), relieved some of the symptoms and she is now able to sleep a bit better. She is still taking the medication prescribed by the doctors (although if i could choose, i'd rather she didn't because of the side effects and possible addiction and the fact that i don't think they are really helping - maybe i'm wrong, as i'm not the one suffering and only she knows how painful it can get). Before then, when she was just taking the medication that the neurologist prescribed without exercise, massage etc, she was gradually getting worse and the side effects of the medication made her drowsy and life-less. This combination of exercise, massage and ice on the legs before bed time seems to have a more positive effect than the medication so far. Lynnwin, thanks for the recommendation, funny enough i found Professor Chaudhur online a few days ago but wasn't sure. It's good that someone else has recommended him too. I'll keep you all posted. Many thanks.

Raphael profile image
Raphael

Hello Jazzystel,

Prof. K.Ray Chaudhuri is excellent and is based at Kings Col. Hospital Denmark Hill S.E.London. He is also to be seen at Lewisham University Hosp. S.E.London.

Prof. Adrian Williams is also excellent and is based at St. Thomas's sleeping clinic south side of the Thames opposite House of Parliament. He also has a private Clinic at 137 Harley Street. WIG 6BF

Other consultants for RLS are further afield in Guildford Gen. Hosp. Surrey Dr. Trend.

Hope this helps.

Raphael profile image
Raphael

Sorry I forgot to say that the unit at St. Thomas's sleep centre is called "Lane Fox Unit"

jazzystel profile image
jazzystel

Hi Raphael, many thanks for the recommendations. I have actually called Prof Chaudhuri's secretary today and asked to book a private appointment, but apparently there is a long waiting period in order to see him - even privately - and he is unlikely to be available over the next few weeks when my mother is here in the UK. I will give Prof Williams a try too.

fontainbleau profile image
fontainbleau

I've had RLS for a long time, am 71 now but started with it in my 30's. I am American but live in UK now. In US I found John Hopkins Sleep Disorder department to be the best, met with Dr. Christopher Early who is well known in the field. We finally settled on Methadone treatment. I was originally hesitant to use methadone but after trying it with Dr. Early's oversight I found this to be truly effective. I had years of sleep filled nights with no side effects. I've been in the UK now for almost two years and methadone is not a prescribable drug here. I've been under Prof. Bhatia's care in London. He works with private patients and under the umbrella of the NHS as well. You will have to wait a long time for an appointment. Since he can't recommend methadone he has me on oxycodone. A drug called Tagament, it has a laxative component in it as well. He (Bhatia) can't prescribe but he can recommend and the physician can prescribe based on his recommendation. I had to get off methadone which was not pleasant before I could take oxy. It was very difficult to get off methadone. Firstly, there are side effects to withdrawing from methadoe which you have to endure, and secondly, there was no sleeping while in this between time of getting off one drug and starting another. However, now that the transition is over the oycodone is working pretty well. It is not as good as the methadone but it does work. I should say that the dosage for both methadone and oxycodone is quite small.

I hope you find this helpful. I don't have all my files with me as I'm away on holiday at the moment. I can give you the details for Dr.Early and Prof. Bhatia next week when I get home and have access to my files if you would like. Leslie

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