Does anyone know of good Rls/plmd specialist in Liverpool or Manchester?

[Delilah162]

Hi All,

Do any of you knowledge peeps know if any specialists in the Liverpool, Manchester area who really knows their stuff about rls/plmd that are NHS?

I’m already under the Walton centre but my neurologist isn’t sure what up do with me. I’m in limbo atm while he gains guilt from his colleagues. I took my last pramipexole on the 31st of August and have been up all night pacing the house since then. Last night I had a sleep study at my local hospital. It was cancellation and I’ve waited over 2 years for it. Apparently the results go up my dr in a week and then they can refer me out. Last week I spoke privately to Dr Jose Thomas in Cardiff he was ace gave me much more information and said I definitely need an iron infusion. It doesn’t look doable to see him via NHS and he can’t treat me privately due to catchment etc. Any recommendations would be great. Sorry for long message!

Thanks in advance ☺️

[Laineypl]

My husband has appt with Chris Murphy, private neurologist based in Alexander Hospital in Cheadle. He is highly recommended on this group hence we've arranged an appt. 🙏🙏.Good luck

[Cookiebum24 in reply to Laineypl]

I have an appointment with him too in October. 🤞he can sort me. All my meds have just stopped working and I’m back to being woken several times a night in agony 😢

[Delilah162 in reply to Cookiebum24]

Ah that’s good to know, you’ll have to post and let us know how you get on. Ah bless I know that feeling, I’m not on anything at the moment and getting little to no sleep it’s wicked. Hopefully Dr Murphy can sort you, good luck ☺️.

[Laineypl in reply to Cookiebum24]

Yes my hubby's the same. Had no sleep again last night, he averages 2 hours a night over a week. Has no quality of life it's bloody awful n I feel helpless for him. Hoping for miracles at his consultation in two weeks. Will post the results after 🤞🤞

[Delilah162 in reply to Laineypl]

You sound like us only the other way around. I totally sympathise. When I did my sleep study they were shocked I was awake all night wandering around the ward. People just don’t believed how bad it is do they? Fingers crossed you get your hubby sorted which will then help you too. ☺️

[Laineypl in reply to Delilah162]

🤞🤞thank you

[Turkeylife in reply to Delilah162]

How are you doing taking iron is it helping?

[Delilah162 in reply to Turkeylife]

I’ve been on iron for absolutely ages and ferritin has only gone up a little bit.

[Delilah162 in reply to Laineypl]

Sh that’s great, I found him last night on Google. I’m wondering if I could get referred to him on the NHS? I could pay for an initial appointment but it the treatment I couldn’t afford to do privately 🥴. All the best for you and your hubby. 😊

[SueJohnson in reply to Delilah162]

I don't think he is NHS.

What about Dr Johnathan Partridge at Stoke that I recommended to you earlier. Did you try getting an appointment with him?

[Delilah162 in reply to SueJohnson]

I don’t remember about him Sue 🤔 I’ll have a look. Thanks 🤩

[tagaxel]

I was just wondering how long you were on pramipexole. If you just having a few restless nights you are getting off easy. I'm not sure if you tapered or you just quit cold turkey.

[Delilah162]

I was on it for just shy of a year quickly went up from 1 to 5 tablets as the effects were wearing off. I’m having absolutely awful evening and nights with a few 10 mins naps if I’m lucky. I got myself off it in about 3 weeks after looking at the information I’d be directed to off Sue and Jools I decided to do it a bit quicker to get it over and done with. I don’t think it’s a nice process done slowly or quickly. Main thing is I’m off it. 😊