Raising RLS Awareness

[Nellybaby]

I am in the process of adjusting to Gabapentin having withdrawn from Pramipexole.I have an excellent Neurologist who is prepared to research an area he has had little experience of. My G.P has shown a helpful indifference.This week I got a phone call from my GO saying she had read and heard in the media about the effects of pramipexole withdrawal and is now very interested in finding out about the condition!!💡💡

By chance I had a dental appointment and had to tell my dentist I was on Gabapentin.He said he had just heard a radio report on pramipexole withdrawal that morning.He equally has developed an interest.

Just thought I would mention this as the power of the media is immense when it comes to informing our medics and nudging them to embark on further research into an area that is alien to many of them..I got the impression that the attention grabbing issue was the Compulsive side effects many experienced while taking Pramipexole!

I am putting RLSUk posters in local surgeries ,out patient Dept and library and the Chiropodists Office.My chiropodist said he is constantly being asked to diagnose sensations people have in their legs.He has been at a loss to know what to tell them but now realises many may be RLS sufferers.

Getting information out there is vital!

[SueJohnson]

That's terrific! It's working! There is hope.😀😀😀

Can I ask who your neurologist is as I keep a list of good doctors in case anyone asks.

[Comrades]

Hi there, I also experienced a helpful indifference from my GP. "isn't it just a twinge in the legs" he said when I was trying to explain how horrific pramipexole withdrawal is going to be. Anyway - he was helpful in agreeing to work around the withdrawal plan so credit there, I too want to draw awareness to RLS and Pramipexole side effects. I am going to attempt withdrawal in the summer time (I live in Jersey Channel Islands and through a media contact will ask if a feature can be done around my withdrawal experience. If I'm going to get little or no sleep for several days then why not combine with an endurance challenge (several laps (around Jersey) to draw attention to RLS. Providing the weather is good that beats rolling around on the bedroom floor night after night, day after day. I'm probably mad but maybe that's another side effect of Pramipexole!!!! Good luck with adjusting to Gabapentin, that's the road I'm hoping to go down