Trapped but hopefully ?: Hi folks... - Restless Legs Syn...

Restless Legs Syndrome

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Trapped but hopefully ?

Smurff profile image
6 Replies

Hi folks, well I'm now out of hospital , thank you all for your concerns and advice especially about getting PALS involved , my RLS would always start around 7pm or if I was lucky a few hours in bed before it started , incidentally during the winter when I used an electric blanket I suffered more which I can only put down to the warmth which triggered an episode ?

As mentioned it always started in evening but now sadly it can happen lunch time if I don't take my morning dose correct me if I'm wrong but I believe this to be augmentation ? After Christmas I have to discuss with my gp about reducing my dose I could start now but have no idea of how much to reduce , also I have been contacted by a team of solicitors , as a patient who I got friendly with contacted a legal friend of his who listened to my story , he made a few enquires and a law firm got in touch telling me I have grounds to sue , I don't really know what to do as GPS are under a lot of strain and in fairness work hard and are not perfect, anyway wishing you all a happy n safe Christmas bless you all !

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Smurff profile image
Smurff
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6 Replies
Joolsg profile image
Joolsg

I don't like the thoughtof legal action against doctors either BUT as the RCGPs refuse to include it on the curriculum, we are the ones who suffer the consequences.Negligence happens daily because of appalling lack of knowledge so perhaps more legal actions would make doctors treat us properly and safely. There have been several instances of hospitals and A&E departments having No idea what to do with RLS patients in extreme distress because of their Negligence and lacknof knowledge.

It's not rare. RLS affects 1 million people in the UK, 100,000 severely.

Incidentally, you should review Pramipexole and the dose you're on and look for signs of augmentation. Doctors should review anyone on these meds every 6 months to check for signs of Impulse Control Disorders and augmentation but as they don't understand the meds, that's not happening.

SueJohnson profile image
SueJohnson

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or when they move to other parts of our body (arms, trunk or face) or when the intensity of your symptoms worsen. So it does sound like you could be augmenting.

Smurff profile image
Smurff in reply toSueJohnson

Oh great !

Freegaza786 profile image
Freegaza786

Smurff hey glad to hear you out of hospital. Apart from the medication-gate, I hope everything else went aswell as it could have.

I agree with Joolsg .

Yes they are under a lot of strain and work hard. However what happened to you should not have happened, and legal action would be the only way to make a start on making sure a lot less suffer from this kind of negligence.

If your case can help one other patient not being treated negligently, that’s surely a positive right.

It’s quite sad it’s come to a point where individuals like us are having to take this course of action. But needs must.

In regards to the pramipexole, unfortunately you are augmenting. I was under the assumption from previous post you already knew that from this forum.

I cant really advise on what dose, and how quick. But you do need to stop the DA. Never stop abruptly.

I know when I came of DA my daytime symptoms almost vanished.

Stay strong. I’m sure other will be able to advise you after this festive period.

Merry Christmas wishing you all the best.

JWBe profile image
JWBe

The EMFs from the electric blanket could be further aggravating your nervous system. Best not to use those.

Merny5 profile image
Merny5

So glad you are out of the hospital and on the right track.

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