I cried reading this.This poor woman was so badly let down by her doctors.
Her GP and the private neurologist could so easily have helped her.
She was clearly suffering extreme worsening of RLS, caused by dopamine agonists and her private neurologist just put her on another dopamine agonist, the patch. Of course it only helped for 10 months. We know further augmentation is inevitable on these drugs. Why don't doctors learn this and do their research?There will be so many elderly people suffering augmentation on these drugs. Falls are inevitable. We have to keep moving, even when exhausted.
How many more people have to die before the medical profession realise dopamine agonists are the main cause of worsening RLS?
My heart breaks for Rosie and her daughter Joanna and her family.
omg 😢 enough ! Things need to change, so badly let down 😞. They don’t care- they just follow these nice guidelines which arnt fit for purpose. Rip lovely lady. My heart goes out to her family xxx
A very sad story. Unfortunately - while UK doctors are not taught about RLS, while NHS and NICE guidelines for medical treatment continue to lead with dopamine agonists, and while UK GPs and the NHS in general remain under so much resource and time pressure - this will continue to happen.
That's why it's so vital for RLS UK to raise money to fight to educate the medical profession: Joanna's terrific give-as-you-live campaign will help a lot AND also support Mary's Meals (feeding 2.4 million children in the poorest countries every school day); if this RLS UK forum's users (who are not already members) could also take out membership of RLS UK - at £15 per year - that would also help a lot.
I'm heartbroken for you and your family, may your Mum now rest in peace bless her, I have just been offered the patch after being on pramipexole, then ropinerol, I've decided to go with gabapentin, I tried a while ago and gave up for reasons but I'm going to try again and hope it works for me. Thank you for sharing your mums heartbreaking story and giving me the push to move from these awful dopamine, Thank you xx
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