I spent 8 months looking for a neurologist specialist who really knows about RLS in or near Cheshire in the NW of England. By chance I came across a Neurologist called Dr NIcholas Silver who works out SpIre Cheshire, The Walton Centre, Fazackerley Liverpool, or Spire Murrayfield. This doctor knows from experience what we is talking about especially in relation to Augmentation. And he's a great listener too which is what we all need. I did ask him if it was OK to put his details here.
Let me know of any of you connect with him. Good luck X
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HilsK
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Thank you so much for posting. It really is appreciated. I have a tiny spreadsheet of medics that people have recommended in the past. I shall certainly add his name to the list.
Funny you should say that because I googled him and found a Dr Nicholas Silver and on delving further found a Dr David Silver as well! Thank you for clarifying!
I don't feel its right to break confidences of a consultation but enough to say he knows what he is talking about and how difficult it is to express how it feels. He does work with many in this situation.
Yes I can tell you the regime he prescribed. Its a matter of juggling appropriate medication and seeing how your body reacts to it so its not prescriptive for everyone.
Bearing in mind I am on 6 x 0.088mg Pramipexole a day , 3 in morning and 3 at night and the aim is to come off that over the next few months.
Also there are blood testing to reveal concentrations of Ferritin, Vit D and B12, Folic Acid and other base line tests involved.
I was using tramadol and diazepam but those have been stopped.
I am now using Carbamazapine .. currently 100mg; 200mg Tegretol retard at night and Clonazepam 0.5mg .... These are in place because of the level of extreme pain I am in at night time and the level of sleep deprivation I have and can be increased.
For pain I have also began an increasing dose of Gabapentin.
As my ferritin levels are really low I am on Ferrous Suffinate which so far has seemed to make no difference to my Ferritin level.
Again I will say that these are being put in place so that Pramipexole can be withdrawn over time without me crashing. The doses are specific to the way my body reacts.
Gosh u are on a lot all I been giving from my neurologist is 4mg patches and high dose of pragablin like a.lot of people on here i have had rls for a number of years.he said in 6 months he will do an iron test
Yes. I have been in severe augmentation for around 3 years, after 22 years on Pramipexole. Augmentation was totally unrecognised or accepted by my GP's .. They didn't even understand what it meant. It was misdiagnosed as Cramp and Chronic Pain by a neurologist who never bothered to listen to me .. never picked up that RLS runs in our family. The UK NICE guideline that GPS depend on was only updated in Late August/September 2020 and only now includes Augmentation. The American set up and level of research is years ahead of the UK yet talking to the even there there are pocket of physicians who are totally blinkered.
The symptoms are in ALL motor muscles in my body, arms trunk, neck .. and the pain is more than I can tolerate. I was hospitalised two weeks ago after I was having chest pains and they finally realised that the level of pain was increasing my bp to over 250/150 and then my body would move into shock. This was a nightly occurrence and the consultant remarked that she was surprised I had survived it. NOT ONE MEDICAL PROFESSIONAL BOTHERED TO LISTEN TO OR HEAR THE PHYSICAL AND MENTAL DISTRESS I WAS IN. The specialist I am now under whom I have had to see privately didn't know how I was functioning. This is happening while I am a full time carer with ZERO support .. because of COVID.
The surgery have been testing for Iron (Hb and Ferritin) for years .. They have never told me my Ferritin is on the low side of normal for people without RLS. It is exceptionally low for anyone with RLS.
I am just so grateful for meeting this consultant because without him I do not think I would have survived.
According to him it is really unusual that any one could have been this unwell without a diagnosis.
It's horrendous that you have had this experience. It helps all of us who are currently feeling really low and at their wits end that there are those out there that will listen and help.
I am trying to find a RLS consultant in or near Southend on Sea? There is a Spire Wellesley hospital in Southend . Perhaps you could ask your consultant to recommend someone within the Spire service?
I had a bit of a search for him as I thought from HilsK experience of him he sounds caring. It looks as if he works at the Walton Centre, Liverpool, which as far as I can see is an NHS centre. I might be mistaken, perhaps Hils will respond and tell us.
Yes Dr Silver does work at the Walton Centre which is NHS but be VERY careful to specifiy you want to be referred to HIM. I was given another neurologist who knew NOTHING about RLS .. complete misdiagnosis as cramp and chronic pain syndrome and a treatment plan that could have really damaged my health further. I put a formal complaint in to them about it which is still being reviewed. I've had enough of this ignorance and disgraceful behaviour from doctors.
With the current COVID situation there may be an issue getting to see him but SPECIFY Dr NIcholas Silver. He is doing video consultations.
Thank you HilsK. I have yet to decide which neurologist to go to, if any. At the moment I am now getting an average of 5 hours sleep again which is good for me. There have been several names mentioned here on the group which sound promising, but they are all a long way from me so it would mean I would only be able to do a video call. My gp threatened to take me off Tramadol at one point, which so far he hasn't done. Fingers crossed it stays that way.
Your input has really been appreciated. Thank you.
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