Sleep clinic

[Zenawarrior73]

hi all I said is do an update following on from my latest appt with endocrinology

The endocrinologist dr David Hughes at Derby private medical was fab pragmatic and said very practically you are being fobbed off this isn’t an endocrinology issue, it’s definitely neurological!!

He listened to all my symptoms observed the muscle twitching I have (bfs) and heard my accounts of RKS and my partner describe PLMD that I have in my sleep along with me waking coughing and choking

The endocrinologist thinks the hip surgery I had is the common denominator is hazarding a guess I have peripheral neuropathy now but as he said not his area of expertise that has set off a chain reaction with the BFS and what was only intermittent RLS into rampant RLS

He thinks I need a sleep study as may also have sleep apnea

He’s re running all my bloods for me in 2 weeks and said if my iron hadn’t risen now 6 weeks after supplementing then it’s a clear indication I’m not retaining supplements and nutrients and thus could be due to the 2 stomach ulcers that were found recently via endoscopy

So my question is where are sleep studies done and do you have to be referred by your neurologist or can my gp do it ? I am midlands based so any advice would be helpful

Still awaiting the Gp to release my records for trial of medical cannabis.

Thanks as always

Claire

[SueJohnson]

There are probably closer ones - check for a sleep clinic in Birmingham but I have Salford Royal Hospital near Manchester) - Dr Christopher Murphy Consultant Neurologist who Runs a Sleep Clinic and also is very knowledgeable about RLS but you would have to see him privately.

There is also Sheffield Adult Neurological Sleep Service located in Sheffield. Dr. Oliver Bandmann neurologist has been recommended but NHS appointments are 1 year out so again would probably have to pay privately.

[Zenawarrior73 in reply to SueJohnson]

Thanks Sue I’m going to look both of those up I’m happy to pay I just want to try and get some proper answers

Thanks so much once again thank god we have you in this forum

X

[ChrisColumbus]

Most sleep clinics/units say that they need a referral from your doctor or neurologist: some take both NHS and Private referrals, some only Private, and the Sheffield Neurological Sleep Clinic has in the past said that they only accepted NHS referrals. However, it's not always easy to get up-to-date information from these clinics: Salford Royal didn't reply to a past enquiry of mine, and while I know for example of 3 in Birmingham and 3 in Nottinghamshire I don't know a huge amount about the services that they offer. Some don't treat RLS but do treat sleep apnoea; many are probably no more up-to-date on RLS treatments than most UK doctors and neurologists.

The first thing to do is to talk to your neurologist/doctor and ask them whether they'd refer you, and if so who to: I may or may not have some information.

[Zenawarrior73 in reply to ChrisColumbus]

Thanks Chris that’s really helpful and it looks like a trip back to my neurologist is in order

[Wanman4]

My experience with legal medical cannabis was that it has little or no effect on my RLS. I will say that one combination of the less psychoactive type of cannabis and CBD was nice for a relaxing afternoon. My MD asked me to discontinue it, because I’m also on Oxycodone for RLS. I hope this helps, but we are all different. I would give it a try, if your Dr allows it. 😎

[Zenawarrior73]

thanks Wanman right now I’d give anything for a twitch and restless legs arms free day/night becatse if it’s not the rls it’s the bfs