it’s only taken 3 weeks after half a lifetime of RLS for 2 amazing medical professionals to get me on the road to recovery. Having spent over £1k in going in the wrong direction with private medical care I found a Consultant Neurologist, I should say a member of this form found him and passed his name on to me. I had an initial private consultation 3 weeks ago, best £250 I’ve ever spent and I appreciate how very fortunate I am that I could afford it, I know not everyone can. Doctor Murphy then transferred me to his NHS clinic at Salford Royal Hospital where I met him to collect a prescription of 3 x 7 day Buprenorphine patches as a trial. I also met a colleague of his Professor Silverdale in his clinic at my local Hospital. He doesn’t treat RLS but specialises in Parkinson’s disease so they refer patients to each other in their specialties. As my surgery is still refusing to prescribe Buprenorphine patches having received letters from both Dr Murphy and Professor Silverdale they have agreed together that as long as I stay under the care of Dr Murphy that Professor Silverdale will arrange for me to collect prescriptions every 3 months for Buprenorphine 7 day patches. I feel extremely fortunate to be under the care of Dr Murphy and Professor Silverdale and although I have written to them both thanking them for their prompt treatment and sincere acknowledgment of what life with RLS does to families, thanks seems far to little for what’s truly in my heart. Dr Murphy is totally disgusted with my surgery and said in a letter to them that their refusal is beyond belief.
To all those out there who have been so supportive during my membership I thank you all from the bottom of my heart and I pray 🙏 that you will all see the sun shining as you step out of that dark tunnel.
God (whichever one you believe in or it none) be with you all and walk beside you each and every day and especially nighttime
HipHop1972 🤗
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HipHop1972
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Hi ChrisColumbus, love your reply and I agree but I believe it’s only the one, I found the others to be really nice but believe under the thumb of this particular GP Partner who won a prestigious award for innovation by introducing a Triage system into medical practices that means you can’t phone a surgery, you either have to book on line, about 10 days for any GP or if you call into the surgery they give you firms to fill in that will then be considered and triaged to a doctor but again about 10 days. I think they are worried that if they stand against him he may leave. It would be the best thing he could do, he never sits down is impatient doesn’t put patience at ease and I put in a complaint about his attitude to me many years ago before he became a partner and I’m not the first. The trouble with trying to move is that they buy in a lot of specialist care so you don’t have to travel to a hospital. But definitely the pox on that one.
Best news ever! I've been waiting to hear how you've been getting on with the patch, and it sounds as though things are finally moving in the right direction. There are good doctors out there. We need to keep adding to the list. I'm so glad Dr Murphy and Professor Silverdale went the extra mile to do what your surgery should have done. Shame on them and all the others that refuse to look at the ever increasing body of research in support of low dose opioids for severe RLS. You kept fighting and didn't give up. I couldn't be more happy for you.
My dear Claire_lc. Thank you so much for your very kind words they mean so much. I feel very blessed and we all should be granted that blessing 🙏
I am walking along a beach and there are two sets of foot prints but a little while later I look down and see only my own. I cry out and say Lord why have you deserted me. To which I heard when you saw two sets of foot prints I was walking beside you but when you saw only one it was because I carried you.
I am fortunate in my faith and that it allowed me to be carried during the dark days.
Dear LotteM, thank you. Each patch is 5 microgram/h and it works with varying degrees of success, I’ve asked for a stronger dose. You are in my thoughts and I hope you have some rest byte .
Hello Nikos64, it is vile, you are right and it is treatable if you find the right people. Even in my dark days I would remind myself of all those who had incurable diseases, and I’ve known some and still do, and told myself that I’m still alive so where there is life there is still hope.
Hi Marlayna67. Oh you are still a youngster 😄 but I know what you mean, it must be doubly difficult over there if people can’t afford health insurance. A fund sounds like a nice idea but I think it would probably end up being like medical insurance.
I’m right with you there Marlayna67 it’s not fair and a lovely thought. Sorry if my response sounded uncaring it wasn’t meant to but unfortunately life isn’t always fair no matter how we wish it to be otherwise. You keep on being the caring person you are and keep having caring thoughts and who knows.
Oh HipHop am so pleased to hear your news & delighted to hear your Specialists have written a letter to your surgery about their entrenched views. Hurrah!
Thanks Simkin, you’re very kind. It was an excellent letter and he has written again stating his disbelief concerning their attitude. He said that there is no medical reason why a surgery think that they aren’t qualified to prescribe Pregabalin when they are quite happy to prescribe medication which have much more serious side effects.
Well done Hiphop. And good work from the two specialists in acting beyond their immediate boundaries. Hopefully they will take this to heart and take it further, such as shaking up their peers by raising awareness for this issue.
Hi Simkin, what am I like 🫢 writing Pregabalin doo, should have read why a surgery think they are not qualified to prescribe Buprenorphine. Senior moment
This is great news. Having just been liberated from DA's by Buprenorphine myself, I understand exactly how you feel. Thirty years of RLS darkness lifted and suddenly light. It seems so simple but it took so long. One can hope other people will find the same relief! Very happy for you. A new life!
Hi really pleased for you. Its crazy how we have to fight to get the help we need for this awful disease . I've justvstarted patches after using the pills I'm on 5mcg but still needing the pills so asked doctor if I can up it to 10mcg and sent them some photo shots of info from this group. They agreed.
When I read of your success this morning, tears came to my eyes. I don’t have RLS but I advocate for a friend that has RLS who experienced augmentation. He was prescribed 2 dopamine agonists concurrently. I’m a retired healthcare professional and realized what was happening then asked could I get involved. It would take a book to tell you all that he experienced. It was frightening and I feared that he might eventually take his life., but I’m glad to say that once we got his primary care provider to review the current guidelines for treatment of RLS, he is on the mend. He currently takes Gabapentin 600mg at 530pm, Gabapentin 600mg at 730pm, hydrocodone 10mg at 830pm with instructions to take an additional 10mg 4-6 hrs later if needed (symptom driven). The usefulness of using hydrocodone was discovered when he had a cold and was prescribed Hycodan for cough suppression. Extended release hydrocodone did not work. Hopefully this will continue to alleviate his symptoms until such time as the medical community has educated themselves regarding the devastating effects of RLS, PLMD…augmentation and learn to use opiates which are a Godsend. Hydrocodone has made a world of difference.
Ah bless your cotton socks Busunsc713. I’m so glad you don’t have RLS and that your friend has you fighting his corner, we all need a champion and you are his. May he continue to get relief with the Gabapentin, All we want from the medical fraternity is that they read the treatment updates and put their outdated views concerning Opioids where they belong in the land fill.
Wonderful news, thank you for brightening up my day. Well done for never giving up, I hope you enjoy your new lease of life. And well done to all this on the forum who listened, advised, supported and did what they could to help.
Hi Baldrick123, firstly are you a Black Adder fan, I am, a brilliant series.
Yes Doctor Christopher Murphy at the Alexandra Hospital Cheadle is the same one that I consulted. He transferred me onto his NHS list at Salford Infirmary.
He helped me greatly so have no reservations in recommending him
Hi HipHop1972. Yes, the Baldrick part of my profile name is from the Blackadder character. It was indeed a great series. I am looking forward to seeing Dr Murphy.
Hi Baldrick123. Ha ha. Hope your appointment goes well, he is very nice but he talks very quickly so listen hard or as in my case I took my wife to pick up what I missed.
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