A neurologist who knows

[Whymelord]

Hi,how can I find out if there is a consultant neurologist in Northern Ireland who would be able to help with Rls. I've asked my gp about referring me, said the waiting list is years, I'm thinking of going private but need a consultant who knows what I'm talking about.

[Madlegs1]

@Raffs is yer man!🤔

[Whymelord in reply to Madlegs1]

Hi, I've never heard of this, please explain, thanks

[Madlegs1 in reply to Whymelord]

Raffs is a distinguished member of this forum.

He happens to live in Northern Ireland.

He may know of a neurologist in that area- or not- as the case may be.

Good luck.

[Whymelord in reply to Madlegs1]

Thank you, sorry to sound naive but how do contact raffs, do I search by typing the name?

[Hidden in reply to Whymelord]

Follow this link

healthunlocked.com/user/raffs

then click on "message"

[Whymelord in reply to Hidden]

Thank you Manerva, I've done that just now.

[Hidden in reply to Madlegs1]

Less of the Northern, its 'the north of... 'around here!!!

Whymelord, PM sent.

[Madlegs1 in reply to Hidden]

Norn?🤪

[Hidden in reply to Madlegs1]

Its the only type of Iron!

[Jose651 in reply to Hidden]

Raffs, if you know of a neurologist around the North of Ireland please PM me. ☘️

[Hidden in reply to Jose651]

Hi Jose651, sorry buddy but no, I don't know one.

The best access we have to an expert is Dr B via:

rlshelp.org.

and there is a thread on a Q&A with him here:

healthunlocked.com/rlsuk/po...

Sorry I can't be of more help.

[Jose651 in reply to Hidden]

No problem raffs, thanks for the links.

Keep safe.

[slim1953]

I have no idea. I haven't found one in the uk.

[Whymelord in reply to slim1953]

Hi,isn’t it unbelievable that nobody knows a neurologist who can help people with RLS, I wonder is there some sort of registration list where everyone with this horrendous syndrome can register so specialists could see just how many people are suffering without any specific help,personally my gp just dismisses it and does not like it when I tell him that I’m on this forum and finding a lot of help and information,makes me furious.

[Madlegs1 in reply to Whymelord]

There is a European board of RLS experts who meet and publish research.

There is no British or Irish member.

Nuff sed. ☢️

[Whymelord in reply to Madlegs1]

Oh, why am I not surprised.

[Madlegs1 in reply to Whymelord]

😏

[LotteM in reply to Madlegs1]

Not true, Madlegs. Dr Chaudhuri (of King's?) is on the EARLS boards. Together a.o. with dr Garcia-Borreguero who is one of the 'bigger' ones and doing research and publishing actively on RLS. But read Joolsg's replies about him (and the Neupro patch). There are no guarantees.

[Madlegs1 in reply to LotteM]

Thanks for the correction.😍

[Swimming2018]

I too am from N Ireland and use this forum constantly for advice and information. I have been waiting a couple of years now for a neurologist appointment and have been told there is only one in N Ireland.

[Hidden in reply to Swimming2018]

I would save my energy and look towards Dr B as I have mentioned above. From all the posts I have read on here I have yet to hear of a single neurologist that has anything near the level of knowledge that Dr B has AND, this is very important, he gives of his time for free to us. How many are going to get that from a neurologist?

[Swimming2018 in reply to Hidden]

I have been in touch with Dr B and he very kindly gave me some advice. He has advised using opiods as everything else has stopped working. However, my doctor won't prescribe anything other than cocodomol and it isn't strong enough.

[Whymelord in reply to Swimming2018]

Hi, how did you get through to Dr B, raffs did tell me but I tried.

[Hidden in reply to Whymelord]

No you are trying 😜😁😘.

If you email

[e-mail]

You will get him. He has a few rules about how to email on the rlshelp.org site.

It might be a bit picky but since he is giving of his time and expertise for free then that would be his perogative.

[Whymelord in reply to Hidden]

😂 😂, its just that I was waiting on my gp to ring me about changing my medication, turns out he is just replacing one DA for another, hope your not huffing wey me again 😂😂 thanks.

[Hidden in reply to Whymelord]

I wouldn't allow that to continue, if one has become troublesome it is better to go on a different type of drug and come back to that when the efficacy of the other drug wanes.

If you are experiencing augmentation this will only continue to exacerbate things.

God damn it, you should not have to come to a forum for this level of support, what the hell are the Drs doing at the moment? Our practice is doing very few appointments and the secretaries aren't even answering the phones after these are filled. I really do wonder sometimes.

[Swimming2018 in reply to Whymelord]

Hi just seen this. As Raffs says [e-mail]

[Hidden in reply to Swimming2018]

I found the 30/500 ones very good. It may be a case of trying them for a bit. What dose are they?

You could also direct them towards NICE guidelines and the use of opiates and the use of Targinact in particular.

Be gentle with Dr's, they are the keepers of the mystical knowledge of medicine and hold the prescription pads of power. They do not take well to the commoners learning for themselves and trying to direct their treatment.

Don't demand, ask why this level of cocodamol and not a more useful one? Remember to that many Dr's do not understand the difference between dependent and addicted and see all using opiates as potential junkies who will be bothering them. To be fair some people are at risk of addiction but that would be minimal if properly assessed. I imagine there are potentially many more problems awaiting those not properly treated.

[Swimming2018 in reply to Hidden]

Yes, that's the same dosage as mine. My doctor is brilliant and so caring. Unfortunately she is off on maternity atm. Other doctors in practice not as knowledgeable.

[Hidden in reply to Swimming2018]

Damn that is unfortunate. All I can add is to ask are you doing the non-drug interventions; stretching yoga exercises, gluten and/or dairy free, caffeine and alcohol free (although some get a little relief from a cup of coffee), hot baths/showers, gentle iron and finally but by no means least sex - in my opinion the best treatment for everything, (although it may not be quite as beneficial in the case of a severed limb - but I am always willing to try ).

That's all I can think of, sorry if its nothing new.

[Swimming2018 in reply to Hidden]

Thank you, but I have been battling with this since birth and have tried everything you have mentioned and more. Only thing not going to try is the soap in my bed!

[Hidden in reply to Swimming2018]

Thank God to hear that. To me that is the ultimate insult - send them off hoping for magic!

OK, time to maybe explore other routes. Have you looked into cannabis and Kratom?

If you are in the UK you could take advantage of Project Twenty21 and the attempts to get people access to medicinal cannabis:

drugscience.org.uk/project-...

Info on kratom can be easily got online or in this thread:

healthunlocked.com/rlsuk/po...

there are links to other resources and some that challenge how good/safe it is.

As with all drugs, please be sure to do your own research into potential harms including the legal ones.

[David1920 in reply to Hidden]

As a doctor myself, they are looking over their shoulders all the time in case they are criticised! Control is everywhere these days!

[Hidden in reply to David1920]

Not to mention patients waiting for you to make a mistake so they can take you to the cleaners!

[Swimming2018]

I live in N Ireland Raffs. I will look into these 2 things you mention. Thank you

[David1920]

The go to person is Dr R Forbes. He's brilliant. He's a colleague of mine!

[Joolsg in reply to David1920]

Could you let us know where Dr Forbes is based? We’re always being asked for details about knowledgeable doctors.

[Joolsg in reply to David1920]

I’ve found him. Belfast. Sorry.