Hi a everyone, I just wondered if anyone of you who suffer this syndrome have ever been referred to able neurologist? I ask because recently I was seen by a psychiatrist for memory problems ie early dementia, anyway I do not have it thankfully, but in his letter to my Dr. he noted that I had mentioned my restless arms and legs but not been diagnosed or seen by a neurologist? I am unaware that this problem could be diagnosed, and that it was only the symptoms that counted.

17 Replies

  • Hi Jayney

    Great news that you do not have memory problems ie early dementia. Have you visited the RLS-UK website? Here is a link from the website which may be of help to you

    Sufferers are referred to neurologists but if their interest is not RLS it can be a waste of time with the patient often knowing more about the condition than the neurologist. It may be better to get a referral to a Sleep Clinic.

  • thank you I will check it out

  • There is also a section For Professionals .....

  • Yeah, I'm suppose to see one that is combo neuro/sleep in July....waiting hahaha but not holding my breath

  • keep an open mind, if this is a neuro/sleep doctor you have a good shot since this one is in both fields. Be optimistic and do your homework before you get there, write down all your questions, and thoughts you have. A sleep diary for a couple of weeks before you go is a good idea, too. Anything you can bring with you to show that you already know you have RLS, and also be sure of the list of meds to avoid, just in case this new one is not as informed as we hope he or she is. Good luck to you nomore RLS. :)

  • Ty Night dancer. I'm hoping so too and I will check him out. My GP has diagnosed me with rls but now there are other complications and I have to go to another specialist this week. I'll find out more.

    Dancing all the way with you 💃💃💃💃💃🎶🎶🎶🎶😁

  • Yes me, I had my first apt at the end of march, mind you they decided to check for something else at the same time, now for my second appt im going to see someone who specialises parkinsons, and theses are usually the people who have a good understanding of rls, so I'm more than happy

  • Best of luck on this friend. Keep us posted.

  • The recent Channel 5 programme on RLS (although mostly sensationalist pap) did highlight that memory loss is a symptom of lack of good quality sleep caused by legs keeping us up all night. Even when we are asleep, it's disturbed. Memories are laid down in the brain during deep sleep so if you don't have adequate deep sleep, no memories are laid down in the brain.

    I saw someone at Kings hospital in March ( supposedly top RLS experts in England). I didn't hear or learn anything new. Spend time reading all you can on here or buy 'Clinician's Manual on Restless Legs Syndrome' by Dr Mark J. Buchfuhrer from Amazon and you'll be more knowledgeable than most GPs and most neurologists.

    If you're near Newcastle, Dr Kirsty Anderson is rated highly. Otherwise, I wouldn't bother.

    Great that it's not dementia;

  • Definitely get the book. Clinical Treatment of Restless Legs Syndrome, by Dr. Buchfuhrer, and others who helped with certain sections of that book.

  • Thank you know I know why my memory is chronic

  • Like kaarina says, it really depends on the doctor. Whether it is a GP, a neurologist, a sleep doctor, it all depends on how much they have dealt with RLS. Shows me the psychiatrist knows that RLS is neurological, so that is why he made that note in the chart. RLS CAN be diagnosed by using the RLS Diagnostic Criteria. It is a list of questions that must have all yes answers (5 little questions) and this is what is known is a "clinical diagnosis". It is done by the doctor and you in the office by asking what your symptoms are and so on. There are no medical tests to actually diagnose RLS, it is all clinical and how informed your doctor actually is on RLS. This is why we say to advocate for yourself, and do research on your own as well as ask questions. In 1996 when I got my first computer, "restless legs" was the first thing I ever searched on the internet, and there 2 web sites that had ANY information, so we had to start from scratch, had email support groups, etc. We did a LOT of discussing for sure. :) But, we found out how to weed out the web sites that make no sense, when the "internet cures" stopped popping up. Now I feel there is almost TOO much information, going in all directions, when the original 2 web sites are still used more than any others. And, now you in the UK do have the RLS Foundation, which is a huge thing. But, we have to VERY careful that we do not jump on everything we see that "they" say can "cure" RLS. ANY web site that says there is a cure, it is time to stop reading that one and move on. So yes, it is clinically diagnosed, there is no cure and we need to research things and not take everyone's word as gospel, no matter how strongly they may push a strange sounding treatment. There is no one thing that ever works for everyone, so that is why it is so important to know things like the diagnostic criteria questions are sooooo important.

  • Thank you for this information

  • Are you in the US or the U.K.?

  • UK Isle of Skye in the Highlands

  • I was seen by neurologist at Mayo and they did tests, that indicated nothing and was told that this starts in the ganglia of the brain where Parkinson's starts, but will not turn into Parkinson's. So if I was getting 75% effectiveness from my medication that was as much as they expect. And they said eventually the medication will cease to remain effective. Since then I've found a supplement to decrease my use of the medication (Ropinirole) to half and I have added infrared therapy and craniosacral treatments as well as increase Magnesium and watching for triggers. I can go several days without an episode and get decent night sleeps. The medical community just doesn't know much about this and I've kept my practitioner informed from what I've learned through this forum. She has it too.

  • Yes I saw a Neurologist he knew nothing about RLS. The only useful thing he did at my request was to write to my GP to ask them to prescribe anythingI asked for to treat my RLS as I knew what I was talking about. Once my GP got the letter I then discharged myself .x

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