What to Expect at Neurologist??

I have had RLS for as long as I can remember, and only just recently decided to do something about it. I first visited my general doc, who tried prescribing me Ropinirole, then Pramipexole, all to no avail (I had intolerable side effects with each). She said there was nothing more she was able to do, so she referred me to a neurologist. My appointment with the neurologist is tomorrow and I am just curious if anyone can tell me what I can expect from my appointment tomorrow - will they send me home with medication to provide me immediate relief, or will this be another long trial-and-error process during which I get no relief? My RLS  severely affecting my quality of life, as I am not getting much sleep, which I cannot afford as a full-time student. If anyone has any advice for me, I would greatly appreciate it! 

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39 Replies

  • I'm afraid its trial and error with drugs. The ones you have tried can have VERY nasty effects. There are many who get benefit from opiate drugs Tramadol,Codeine  and Targinact are all used.

    I guess by the PCP tag you are in the US? If so cannabis can be very useful, (its useful in other areas too but a pain due to legality:) ).

    There are non drug approaches too like a vibrating pad<(cannot remember name but I'm sure some one will be along soon that does) and a VitalTones RLS app from Amazon store, (free).

  • Thanks so much for your timely response! I am in the US, but in a state in which cannabis is illegal. I will look into the vibrating pad, thanks for the suggestion!

    Unfortunately, the only times I've ever had any kind of real relief from my RLS is whilst taking pain meds for other conditions. I'm hoping this is what the neurologist will recommend, because I can't wait any longer for relief from all this trial-and-error :/

  • Plenty of info on the treatment link on the left of the page below:


    I have used Kratom, (again check your state), which works on teh opioid receptors but is less harmful and less addictive than proper opioids - there are a number of us on here that has gotten good relief from it.

    Let us know how you get on with the neurologist, best of luck for tomorrow.

  • Thank you! I'll keep you updated.

  • The name of the vibrating pad is Relaxis but i hear insurance is not covering it yet.I would go for the painkiller Tramadol .Let us know how you go.Also check you are not taking any meds which make RLS worse in partcular certain antidepresants antihistamines antisickness or any otc sleep aids x

  • Yeah, I definitely can't afford anything out of pocket. Unfortunately Tramadol is not a good option for me because, having been prescribed to it so much recently, my tolerance has gotten very high which puts me at risk for seizures. I am not on any medications right now but thank you for considering the drug interaction concern!

  • If you want to try a different dopamine agonists  (same class as Requip ( Ropinerole ) Mirapex ( Pramipexole ), you could try Ritgotine Neupro patch It may not give the same side effects as it is slow release and has the lowest rate of augmentation. I use the patch myself. It is more expensive though.I am in the UK so same price for every prescription but I don't know how much it would cost in States but won't be cheap Only other thing you could try is a different painkiller or one of the anticonvulsant meds such as Gabapentin or Lyrica  (Gabapentin is the cheapest ) x

  • Hi HM, you sound a little young to have severe RLS.  If you're pre-disposed to RLS then more substances besides "medications" can worsen RLS.  Melatonin for instance.  Being on the pill or using sugar substitutes.  Or  OTC antacids like Tagamet.  Some feel better if they don't eat a large meal in the evening or exercise vigorously in the evening.  Hopefully the doctor will check you for anemia.  Even if you're not anemic a good form of iron taken on an empty stomach before bed might do the trick for you.

  • I'm almost 24, and I've had RLS for at least the past 10 years. I do not believe it's genetic for me, as none of my family members have ever experienced it (though perhaps my deceased father had). I've tried melatonin, and sure enough it did not help. I don't take any OTC supplements. I exercise early in the morning and I don't eat large meals. My primary care doc did blood work to check my magnesium, iron, and potassium levels, all of which were fine - which is why she had to refer me on to a neuro. Sorry, I don't mean to discount anything you've said, it's just that I know there's nothing I'm doing/not doing that's antagonizing the RLS.

  • I hope you get some relief soon.  I would still try a good form of iron (as my name implies - such as ferrous bis-glycinate)  before bed on an empty stomach.  Studies have shown that we with RLS have anemic brains, not really bodies.  Sometimes it will work from the very first pill.  The other thing with RLS is that it can be triggered by conditions and events ie spinal injury, diabetes, thyroid disease. Good luck.

  • Okay, I will still consider it. Thanks!

  • hm523, if you know for certain that there is nothing you are taking, have taken or as you are saying doing or not doing to have RLS, then you most likely do have Primary RLS.  One of your parents could have had the gene which was dormant and nothing triggered in off for one of them, but still passed the gene down to you.   Secondary RLS, is from having a underlying condition, if you take care of the underlying condition then RLS symptoms can reduce. 

  • In your reply to HM523 you mention there might be a negative impact in using sugar substitutes. I don`t suppose you could enlarge on that for me? Do you mean Aspartine?  Does it worsen RLS/ I would be interested to know. 

  • Unrelated but I love your username - unfortunately so relatable!!

  • My username is rather apt, considering the amount of time us sufferers spend roaming round the house, when we should be asleep!  My name is derived from the place where I live -  Wideopen! 

  • All of them.  For me at least, so yes aspartame, especially at night.  Within about 15 minutes of drinking diet pop.  I don't think I've been bothered by saccharin but you might be, so they all have to go, at least at night.  Do you drink a lot of diet pop EyesWideOpen?

  • No, I never drink that, but I have at least 6/7 cups of tea coffee a day and all with two or three artificial sweeteners. I will try and find a more natural alternative.  Thanks for your reply.

  • For me the yellow packets of splenda were really bad, worse than the blue packets.  I believe it's "sucralose."  One day I had alot of it and it was every bit as bad as the melatonin I used to take that gave me restless body.

  • Thanks Pips. Any idea what it would cost to purchase privately?

  • I have heard close to one thousand! !! 

  • Ouch! Thanks Pips -was going to like the post by way of thanks but I'm not thanking that price!!!!

    Mrs said she'd get it for me, (she thought it was £200 - £300), she may start saving!!

    I wonder does it work for people whose RLS has progressed to the rest of their body?

  • I have taken many of the drugs identified for RLS and found after being on them for long term they no longer were effective.  The last medication I took was Mirapex which eventually had augmentation and was terrible.  I took it for about 15 years.  I went cold turkey on it this past November and now just take Percocet in the lowest does possible.  I find it does the best for me.  Because of all the people who abuse the medications for pain its difficult to find a doctor who will prescribe it for me.  But I have developed a good relationship with my present physician who seems to care and prescribes the meds for me.  I have had RLS for well over 50 years and am now 74.  It is a difficult condition to live with and one which many people just don't understand.  I usually tell people I have a movement disorder which seems to satisfy their questions.  I guess at least they seem to.  Good luck and just know that once you develop a good relationship with a physician he or she should be able to work with you.  I also kept a journal for a period of time to find out which drug worked best. 

  • Hi, I have had RLS for some time now and I also get restless arms..I went to the hospital after being refered by my doc..all they did was a few leg and arm tests, moving etc..then used some needles in my legs , which you don't feel, hooked up to a sound monitor which records any movement in your legs...you can hear the sounds your legs make which determines how bad the RLS is.....They havn't done anything else.....I still have problems..They may offer something different now, this was done early last year......

  • Did they not believe your RLS was bad based on your tests? Boy, I hope that doesn't happen to me. I can't afford to wait any longer for a solution.

  • No one can test for RLS, it cant be done.  RLS is diagnosed by how you describe your symptoms to your doctor.   I cant believe the hospital thought that what they did would diagnose RLS. 

  • He 523 sorry you are having probs it is a job trying to find the right medication,when I went to the neurologist he asked me what. I was taking then he thought maybe to try something else  ,I don't think it was much good going  because I am not taking what he suggested  I. am on Tramodol,good luck but don't expect a miracle because there isn't one ,I do hope you find something that will suit you x

  • Thank you! I'll let you know what happens today

  • My GP referred me to a neurologist and was told that the answer to my prayers was cognitive therapy!!!  He did not do any tests, just asked me questions.  I came away feeling very low and felt that my severe symptoms were not being taken seriously.  I do hope you have better luck.

  • Oh no! That's my worst nightmare :( so sorry you had such a bad experience.

  • Understand patchs Nupro or Premipexole or Rotigotine may be effective trial and error - those in the 'know' don't like this as no solution good luck

  • I saw two neurologists. They had no more info or tests than my GP, but one put me on neurotin (gabapentin). I only take 300 mg,  a minimal dose, at bed time. It gives me 5 hours sleep most nights for three years and only side effect is occasion Al headache or dry mouth upon waking. You can try Relaxis Pad before buying for around $100, and apply this to cost if u buy. I did, and it stops night time symptoms but then I can't get back to sleep. I plan to use eszemd.com to get cannibus card in California and give the stuff a try. Be sure to eliminate all triggers.

  • I have found that Magnesium is the answer to RLS. Does anyone else have experience with it? We all have Magnesium deficiency due to our foods being deficient in it. Some of us also have medical conditions that deplete it. I hope this helps all of you. I had it so bad that every night it would plague me. Life wasn't worth living if I had to live this way and no doctors were helping! 10 years I have gone through this and I was at my breaking point. I turned to functional medicine due to non of the other medications working. What a blessing!! 

    Much love ❤️

  • Well Duckish, you're the straw that broke the camel's back.  I'm giving magnesium, in the form of magnesium taurinate a try.  I read several years ago that magnesium aids in production of dopamine...but we with RLS supposedly have plenty of dopamine, so I dismissed it.  Plus I took magnesium citrate for years (for motility) and it never seemed to help with my RLS.  At any rate, here is a somewhat old article, indicating that magnesium increases dopamine binding to receptors.  The article is one paragraph but so complicated it made my brain hurt.  The title of the article really says it all.  Now mind you it sounds like the magnesium was given directly into the brain.  And that's why I bought the magnesium taurinate - it's a form that is supposed to be able to cross the blood brain barrier.

    OMG, it would just be so amazing if it works the way it does in the experiment.  A dream come true.  Article to follow...

  • Make that Magnesium Threonate, not taurinate.

  • Well I can't get it to paste.  It's a 1982 article by Science Direct.  If you google magnesium and dopamine receptors it should pop up, along with other articles.  The bottom line is even though we don't need more dopamine we do need more binding to our pathetic receptors.  It's winging it's way to me from Amazon :)

  • I take Magnesium for ILS and it works, does not work on restless arms and shoulders though. Acupuncture works on both plus fibromyaliga and sleeping.

  • What kind of magnesium do you take Dorma?

  • So my magnesium threonate has not arrived yet but I did have annoying RLS tonight for no apparent reason which is becoming ever more common and decided to give the magnesium citrate in my cupboard plus some taurine a try.  An hour later my RLS is gone, but I have a headache.  But I don't care, I probably overdid it on the two of them. Don't know if any of this is related to anything.  I feel like I will have to give the magnesium a dozen more tries and with repeated successes (and last through sleep) before I will recommend to people like I do with the iron.  My fingers and toes are so crossed and I just wanted to let you know and thank you for sharing :)  The RLS world so needs treatments like this.

  • I'm so glad it helped! I am using Magnesium Sterate. 1 tablet works well for me. The bad thing about taking too much is headache and upset stomach. So happy you've gotten relief!! 😀

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