Addendum to the very good recent posts from Avosyl and Tunstall

Very good and informative posts from Avosyl and Tunstall . We all know that every form of medication has side effects and we must be prepared to question our GP if the benefit derived from any medication is outweighted by the side effects.

Over the past 3 yrs I have tried Mirapexin, Neupro, Requip, Neurontin and Lyrica. (only one at any given time ). All gave limited relief but the side effects outweighted the relief. ( I was basically tired all day long ) I am now drug free and felling much better although the "night dancing" continues and 2 sleep studies confirm that I am getting by on less than 2hrs "quality" sleep a night.

My consultant agrees with my approach and now suggests going down the Neurologist route similar to what Avosyl has posted.

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  • I hope you find as good a Neurologist as i seem to have done. It makes such a difference. One of the things he has said is that my reflex actions are too fast and sharp. I finally got round to looking that up and it could be there are problems behind it all which in turn could affect the RLS. At least he is looking for underlying causes which nobody has done before. Will keep fingers crossed that you get somewhere with it. It must be difficult to function on only 2hrs quality sleep a night and has to affect you in every aspect of your life. I hope for your sake you find some answers and get a better nights sleep at the end of it.

  • Can you tell me what the problems are when reflexes are too quick? Would be helpful to know. I am on .78mg of Pramipexole, but have had the reflex problem for years.

  • Avosyl.....are you in the UK ...? If so ...can I ask who and where your consultant is.......Thankyou!

  • Actually your neurology consultant....

  • Hi Dragon yes am in UK and the consultant i saw is a Mr T Wolf at the James Cook University Hospital in Middlesbrough. I take it your in the UK as well. The reflex situation i had to look up and its to do with the Babinski reflex which as far as i can tell is all to do with the spine and things like trapped nerves, discs, spondolosis etc. Theres a bit on this site that may explain it better. nlm.nih.gov/medlineplus/enc... I am not going to read too much into any of it as i would rather wait and get a proper answer than worry myself silly that its going to be serious. I am waiting on an appointment for a full body scan and if there is anything they should see it then. I do know i have a problem in my neck which physio told me was a trapped nerve so it could just be that. Hope this answers your question dragon and kyle.

  • Many thanks for your reply. Will look up the website you suggest.

  • Most of the tests they do are tests to rule out other conditions that may mimic RLS in some ways. The only real RLS test is a ferritin level (how your body stores iron) which is differnt from a simple iron serum test. some people have trouble storing iron. some are helped by iron therapy, but we always have to talk to our doctors. Too much iron can be worse than not enough. Iron overload is a serious problem, so that is why we have to be tested first. We can't just start taking iron, because we may not need it, and it certainly does not help everyone like anything else. We have a lot of trials and error. so good for you getting the tests to rule other things out, but there is no test that will say" you have RLS", unfortunately. So, after the neurologist rules things out, that is how RLS is diganosed, and listening to the patient, which some doctors have a problem doing. I am glad you have a good one!

  • We can only exist on 2 hrs sleep for so long. there is no sleep "bank" where we can save it up and use it for later. ;)But, eventually all that sleep deprivation will get you in one way or another.

  • I am lucky in that i changed which GP i was seeing at our surgery and although he admits to not knowing about RLS he seems to be willing to learn. He told me my iron levels were perfect and i explained about the ferritin levels just to find out he was going to do a blood test on them however the hospital are doing it. I am lucky that i now have a GP willing to learn and a consultant who knows what he is talking about. I am hoping when i see the GP next week he will have all the results from the blood tests along with the letter regarding the new tablets. Will let you know how it turns out.

  • thanyou avosyl for the info....please keep us informed...it will be good to have a name to tell my gp..

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