So happy right now! Just had a phone call from my Dr and she's referring me to a neurologist, I've had this for years now and they've just thought I'm mental, but the last month has been torture!! I've had some blood test and she checked everything, unfortunately they all came back OK, I was hoping I just had lack of iron, but it's all normal! She doesn't wanna start me on any meds until she gets a specialist to have a look, but fingers crossed!!! The only worrying thing is over the last month there's been less restlessness and more pain and cramping, also weak leg muscles, but we'll see what they say, at least I'm not crazy and making it up!! Yay!!

7 Replies

  • Congrats, sort of!!

    It's lovely to be taken seriously but from my experience neurologists know little more than GPs about RLS. In saying that at least they will start a drug regime for you.

    A word of advice, get the neurologist to plan ahead drug wise. Get them to include in the report to the GP not only current treatment but also a treatment path way - as you will know form reading here often drugs only word for a while before people become tolerant to them or the side-effects cause too many problems, then you are back to square one with a GP like yours :( .

    The drugs that can be prescribed include heavy duty opiates and Drs are reluctant to prescribe them so if they have word from the neurologist about a number of strategies it says time faffing about with a cowardly GP, (sorry but a bit of research and some balls and the GP could take care of it).

    Good luck and I wish you many restFULL nights.

  • When a doctor says all came back ok, you need to know what your ferritin level number was, if you had that test done along with the blood tests. Doctor's are not always aware that the ferritin level for RLSers, need to be higher than normal. Its recommended to have your ferritin level 50-100. Lower than that, then iron pills can be helpful, but not for everyone.

    Are you still getting the urge to move with your legs..? As thats the important part for being diagnosed with RLS.

  • OK, so not so happy now!! Picked up my referral from the Dr's and have noticed I've been referred to a rheumatologist not a neurologist which is what I thought she'd told me (think I just heard ologist and assumed!) Anyway, what can they possibly do??

  • Why am I not surprised? But, a rheumatologist might even be more helpful than a neurologist. As Raffs says, most neurologists aren't very knowledgable about RLS.

    Print off all the relevant info on here and take it with you.

    Good luck,


  • Thanks, I'm going to take everything I can!! Unfortunately the closest appointment isn't until the end of November so I've got 6 weeks of this, but it's the 1st time someone's taking it seriously so I'm prepared to wait! :)

  • Good luck and fingers crossed

  • I hope you get to see a good neurologist who is not only knowledgeable but caring and empathetic too x