Doctor Jose Thomas who specialises in Sleep Disorders and RLS wrote to my GPS surgery after my consultation with him in Cardiff on the 27th September The surgery hasn’t contacted me about the report and recommendations from Dr Thomas, they will have received it last week as I was copied in, so I made an appointment myself for 3 pm today 11 October. I received a Text message this morning saying that my appointment was cancelled due to unforeseen circumstances, nothing more and no alternatives were offered. I now have to make an appointment on line with pot luck on a GP, earliest available appointment in 9 days time and if I want to see a specific doctor then I have to phone the surgery and hope I can be fitted in earlier than 9 days.
Maybe they spat their dummy out as I saw Docto Jose Thomas without referring to my GP first. Whatever the reason it stinks and says a great deal about their feelings concerning RLS patients as non urgent medical cases 😡
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HipHop1972
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That’s how I feel Joolsg. Anyway shmoozed a nice young Care Navigator (Receptionist in my language) and the earliest appointment is on Tuesday 17 Oct. with a Doctor in training who is very nice and who I’ve seen before. This might actually be my best bet as he, I think, won’t yet have been indoctrinated and may well listen and hopefully follow through with the recommendations and medication suggested by Dr Thomas. Anyway I’ll take all the info with me and this may well be the only doctor in the practice to actually read it. 🤣
I agree. The younger doctors are usually more open to learning about RLS than older doctors, who are sometimes set on their ways and don't like it when their patients know more than they do.Best of British!
Feel for you about getting appointments with doctors in the UK is a lottery!! Can anyone tell me why there is a lack of knowledge by GPS in the UK of RLS. Please who is DR Jose Thomas ? As my GP does not take sleep deprivation ( 3 hours broken sleep a night ) seriously and does nothing about it whats so ever
Hi Nick-the-turk. Thanks for your reply, I’m afraid I can’t get into the minds of some of these Doctors and haw they can just ignore lack of sleep being a medical issue as if it goes on long enough and is severe enough it causes various other medical conditions not to mention mental health. Sometimes I think that as they worked ridiculous hours as junior doctors and got through it that we should just toughen up. I wonder how many of them self medicated to get them through. Sorry but he’s a blithering idiot if he doesn’t realise it’s an issue. I got to the stage where I couldn’t work out how to make a cup of tea, so that’s not serious depreciation.
Anyway your other question. Doctor Jose Thomas is a consultant In Sleep Disorders and RLS. and is based at the Spire Hospital in Cardiff South Wales. Contact his secretary on mobile number 07392 543507 Email medsecstj@gmail.com
He is a great guy and works in the private sector but also with the NHS ha gave a talk and presentation at out RLS-UK AGM along with Professor Mathew Walker who is a leading Neurologist at the National Hospital for Neurology and Neurosurgery in London.
I wish you luck, it’s like trying to platt sawdust.
HipHop I live in the Somerset area and have been suffering with RLS and all that comes with it for over 20 years now whilst holding down a full time job as a postie and my sleep is at best 3 hours of broken a night the rest of the time pacing the carpet or climbing the walls waiting for the clock to hit the time its when I get ready for work as we all know its a horrible condition and not once in 20 plus years apart from sleeping tablets that makes your condition worse have I been offered an help for sleep deprivation even though at times I and my wife have been in tears in front of the Doctors its shockingly worrying that RLS is so low on there spectrum even at neurology level
Hi Nick-the-turk. You live in a very beautiful county and does cider affect your RLS, no, I’m not joking, as I’ve been told to stop consuming alcohol and I know how wonderful Somerset Cider is. You say you are a Postie so you do a great deal of walking carrying a mail bag, heavy. Could your round be affecting your RLS, they do recommend gentle exercise but being a Postie I’d think isn’t gentle. I used to love walking the hills but a 4 mile stretch sends my legs up the wall. Sorry not trying to depress you but you must walk a long way each day carrying people’s post so that’s no gentle exercise , so now I’ve depressed you, don’t go reaching for the Scrumpy as that might, I just say might, make it worse. Please contact Dr Thomas as he can definitely help you. Does the Royal Mail provide there employees with Medical Insurance as if they do it could speed things up for you.
We all who suffer the torment of RLS feel such anger and frustration that we are hammering on the door but no one opens it. Good luck 🤞
YES cider and indeed alcohol affect my RLS big time and avoid them my wife has always said the RLS went off the scale when I started as a postie 21 years ago I am in the process of changing my job to something easier away from Royal mail so time will tell if she's correct for once I hope she is correct NO medical insurance at Royalmail but I don't mind funding any treatment as long as it brings relief
I wish you well nick-the-turk and hope you find suitable employment and sometimes we have to listen to our wives 🤣 I’m with you been standing and wandering around all day been really bad the past 3 days and nights, don’t know why nothings changed. Please keep us up to date with your progress
Hi Nick sorry you are suffering again i guess the codeine phosphate isn’t working so well now. I ended up taking it and had to come off it as it stopped helping. The next med i was put on is Dihydrocodeine so stonger but i have to cut it in bits as too damn strong for me as my tolerance is low. But i am getting f some sleep. also just bought the therapulse i have a long post on here all about it. You will see it as Hidden as i accidentally deleted myself then had to join again. I hope you get the job change and get help again. with your RLS. x
Hi , I was thinking about Dr Thomas as Im only an hour from Cardiff . What did you think of him and what did he suggest ? I was seeing one in Bath but I think hes a busy man and rarely replies now .Im at my wits end tbh . Take care
Good morning Huntingleroy. I thought Dr Jose Thomas was a very caring physician who understands RLS and the effects it has on people’s lives. He attended this year’s RLS-UK AGM and gave a talk alongside Professor Mathew Walker on the condition. I found him very helpful but it’s going to be up to my own GP to follow up on Doctor Thomas’s recommendations as laid out in the report sent to my GP. I will see on Wednesday when I’ve got an appointment with a GP, not the one to whom Dr Thomas sent the report so thank you, I think I may need that luck you wished me, as if life with RLS isn’t tough enough 🤣
Give Doctor Thomas a go, nothing ventured nothing gained.
Ah thank you thats really helpful , i really cant take much more . Life is pretty unbearable at the moment Trouble is , I think ive tried pretty much everything so far. Did u need a gp referral ? What is he suggesting ? Take care
Hello again Huntingleroy. Both still awake and I’ve just put another log on the fire to cheer things up a bit. Apologies I didn’t really answer your question. Dr Thomas suggests that I’m prescribed Pregabalin before tailing off from my final 1mg Ropinirole, I’ve reduced from 6mg / day over the post 12 months. He also recommended lifestyle changes by cutting out things that can make it worse, smoking, chocolate, alcohol, caffeine etc; well I don’t smoke, hardly ever drink alcohol and eat chocolate, I’ve done this for 3 weeks now and if anything my condition has worsened, so will reintroduce them again all except smoking which I gave up about 15 years ago and have joined the ranks of the intolerant non smoker’s 🤣 He also recommended I attend a sleep clinic as he has found that if sleep conditions are treated then RLS becomes less of a problem for patients. See if you can get hold of a copy of his presentation at RLS- UK, not sure if your a member but Joolsg on this forum might be able to send you a link, I’m afraid I ain’t got the skills 🤣. I hope this helps Take care. Going back to bed now 🤞
Morning hiphop hope you got some kip.I had a bath at 3 , a new hotty bottle and then plugged some music in and slept about 3 hrs . Like you I was on 6mgs of Ropinirole (far 2 much ) and weaned off in March and finished a week ago. Its been pure hell and lots of suicidal thoughts . I take in the morn b12, gentle iron and magnesium, goodness knows if they help ! I then take a lot of Gabapentin , also got Tramadol ,Dipyridamole , Codeine and Clonazepan to help but nothing really helps . Im chatting to gps pharmacist and doing to try Pregabalin . I dont smoke , havent drank since March and can take or leave choc . I dont really want to pay another £200 to see Dr Jones because Im not sure he can do anything for me and Im certainly not paying to go to a sleep clinic!!! Good luck and keep smiling ...tho its hard
Hi Huntingleroy, well you have done extremely well to get clear of Ropinirole in that time. You may have read on here that it takes Gabapentin at least 3 weeks before it kicks in. You appear to be on a lot of additional medication and if you’re still suffering as you obviously are, you Bath at 3 and I have hot showers as I can’t get out of baths ha ha and my wife would probably threaten to drown me if I called for help in the early hours of the morning 🤣🤣. If I could make a suggestion that you contact Joolsg and or Sue on this forum about the additional medication you take as they may be having an adverse effect on your RLS.
It’s strange but Dr Jose Thomas told me that RLS isn’t usually a problem in n the morning but even if I’ve been on my feet most of the night and manage to get to sleep again at 4 or 5 in the morning RLS always wakes me up again around 7 - 8 and just have to get up. So where this not usually a problem in the morning comes from I just don’t know 🤔
Take care and hope you find an answer sooner rather than later 🤓
Ive just been going through all my rls paperwork since 2003 and i tried gabapentin then and it didnt help so going to try Pregabalin hopefully as from tomorrow . Nothings helping with the withdrawing , I did have Oxycodone once which was good but made me itchy ! Yes I chat to Sue on here a lot , she is great . My lifesaver sometimes. Yesterday was a really bad day , I cried most of it and had suicidal thoughts . My hubby is great but helpless. I did buy a little battery massager off Amazon which helps sometimes and Ive got a little cycle that sits on the floor and that helps . Good luck getting off that Ropin its evil ! Might chat later !
Hi Huntingleroy, I've just noticed your message, and wonder what the "little cycle that sits on the floor" is, which is helping you. Sounds like it could help me too..
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Pramipexole supply not available ... terrified 
Interesting update for those in the UK whose GP practice has Buprenorphine red listed
Ropinerole not working
Not RLS
