@JumpyLegs 

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JumpyLegs

Severe Restless Legs

I've had MS for 23 years and I've had every single symptom it's possible to have. As there were no drugs available when I was diagnosed and no internet or mobile phones, it was a very lonely time. I started Tysabri 9 years ago and it has been brilliant. However, 14 years without any treatment and 3 major and around 8 minor attacks every year has led to permanent damage. I'm now an advocate of Strong aggressive drugs as first line treatment to prevent permanent damage and brain loss for newly dx peeps. The worst symptom I have ever had is severe Restless Legs (Willis Ehkbom disease). If you have MS you are 11 times more likely to have RLS than the general population. I was on a dopamine agonist for 11 years but it not only stopped working in June, but I developed severe augmentation so had to slowly reduce dose and go through withdrawal. The worst time of my life. I still have nightmares thinking about it. Most GP's know hardly anything about the condition and even less about treating it. Sadly, most MS neurologists and nurses don't know much about it either. There are only about 4/5 specialist neurologists in this field in the South East and the waiting list is well over a year. The drug options available after dopamine agonists have failed are limited and not very effective. Severe RLS causes severe sleep loss ( I average about 4 hours a night) and the only way to relieve the horrible creepy, crawly, fizzing, jerking sensations in the legs is to move around- not so easy when you have MS and MS fatigue. It's like water torture used to stop people falling asleep. You're exhausted and can't keep your eyes open but your legs want to river dance around the bedroom all night long. I've found a brilliant help forum for RLS sufferers which has literally been a life saver. I haven't yet anyone else with MS who also has severe RLS but would be interested to find out how many there are out there and how many may have had there RLS symptoms misdiagnosed as MS spasms in the legs. Just a few thoughts,
@JumpyLegs

How I hate autocorrect. Last para should have said I haven't met anyone else.. and their symptoms. Told you I was grumpy sometimes!

@RBelle

Hi jumpylegs, my name is Rachael and i suffer from RLS or Spasms and im not entirely sure which one, i seem fine when im moving but quite often as soon as i sit down to relax it starts.... i continually have to bend and straighten my legs usually my right one but it can be both and i also cant bare it if my feet are touched at this time as it seems to amplify it 100 fold.... i know what a torture this can be and totally sympathise with you. did you say that you have a successful solution to try... i take baclofen at the moment but im not sure that it helps. i would be grateful for any tips.