Hello again fellow sufferers. Well I've lost track of where my journey is at. I paid to see a private neurologist who prescribed pregabalin 75mg no as gp increased it and 3 clonazapam early evening on his advice. At first it was amazing no symptoms slept right through no twitching or thrashing about for about a month. Now owly bit surely it has returned big style!!!
I saw a registrar through NHS who said to go on a DA I said no as augmentation which he looked puzzled at! He then sent me loads of different blood tests. Then asked me about a sleep study which is what I wanted. He referred me to neurophysiogy. Got a phone call from them the woman on phone said "oh no we don't do them for RLS only people with narcolepsy. Then not heard a thing. Then I chased up what was happening. I got my digital letter to got to the hospital to see neurologist. I waited 40 mins and then asked if they were running late she then started with her apology I'm so so sorry it should have been a phone call!! I was fuming. She rebooked for the week after when I answered the neurologist said " I do t k ow why they've asked me to ring you your under a different neurologist. I explained I am suffering badly and explained I've seen professionals in the past but they have all left and they weren't neurologists!! He just repeated I wasn't his patient. I said so I have to suffer till I get another appointment which may or may not happen I could have cried I was more angry really.
Im thrashing about arms n legs trying to hold my job down and it disturbs my other half. I'm getting no where!! Just plod on. Any suggestions appreciated I'm all out of ideas. 😢
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Netball-50
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I'm so sorry you've been badly let down. Sadly, it's what happens to the overwhelming majority of RLS patients because RLS isn't taught at medical school or during GP training.Here's a link to a GP training company in the UK that teaches 10,000 UK GPs
It's actually very good! I'm surprised how up to date it is. The dose you're on of preg is far too low for RLS. You should ask your GP for the correct dose which us between 150mg and 450mg a night. Titrate up slowly by 25mg every 2 nights until you're at 250 and monitor effects.
Keep trying other drugs and diet. Great information from the other replies. I use tramadol and has worked for over30 years. But......you have to experiment on when to take and how much. Never take the slow release as it doesn't work for RLS, you need the 50mg tablets. I take 2 or 3 tablets, 3 to 4 hours before bed. NO RLS the majority of the time. You need to work up to that amount or they will keep your mind awake. try, try and try again until you find what works for you. Wishing you the best....been there.
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