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New "diagnosis" of RLS

Posted , 9 users are following.

joanne06674
joanne06674

Hello all, 

After a year of "pre pins and needles" feeling in my calves and feet when sitting or lying, a normal MRI on brain and lower back (ruling out MS/slipped disk etc). Normal readings on thyroid and B12, a specialist has told me the nearest thing he can point to with my symptoms is RLS. Being completely new to this I wonder if someone could point me in the right direction as to what to try first. I really appreciate your time and thank you in advance for any advice you can give me.

Jo 

0 likes, 8 replies

8 Replies

  • frankiej79
    frankiej79 joanne06674

    Posted

    H Joanne 

    It seems like you had quite a lot of tests done to come to the conclusion of RLS not many have had that done but that’s besides the point, you looking for best treatments to relieve symptoms?

    I’ve had rls from my late 20s mildly up until then was hardly anything til I hit 30s I’m 39 now and in the past 9 years I’ve been mixing and experimenting with my doctor on correctly finding a drug to help, there are lots out there that you can try I done em all my advice is to try ropinorole first and maybe a dose of gabapentine (600mg) 2 hrs before bed  .

    Like I say I have done them all and there is a lot to take in there are many side affects to these drugs some are just minor and others can be extremely bad can affect your way of life forever, I know it sounds all scary but I’ve been there and seen wot it can do.

    So I would recommend you talk with your doc and try the ropinorole option first before anything else and see how it works it will take 3-5 weeks before you really notice it helping so stay with it give it a chance jo.

    Good luck and let us know how you get on .

    Frankie 

    • joanne06674
      joanne06674 frankiej79

      Posted

      Frankie, 

      Thank you so much for taking the time to reply, I will speak to my doctor as you suggest and go the ropinorole route to start.

      When my symptoms first appeared I had all my bloods done which showed B12 and thyroid as normal (B12 deficiency was my first guess). After those were ruled out I was sent to a neuro and was suspected with MS due to a pale optic nerve hence the MRI. This was all in Jan 2017. So I have just been living it really. Around came Jan 2018 and I decided to spend the money on seeing a private specialist (I am in the UK) to see if he could shed any light, that was this morning, and here I am.

      Again it is so beneficial to speak to people going through the same thing, thank you.

  • frankiej79
    frankiej79 joanne06674

    Posted

    Hi Joanne 

    It seems you had a lot of time and indeed money invested in this and in a way you ruled everything else which is good but in my opinion drs are not very knowledgeable on the matter I worked primarily with my neurologist trying all these different meds with some good and bad result with the ropinorole you may feel a litttle nausea and or dizziness at first but will subside just give it the time to work before changing to another medication lots of people recommend other ways but we’re all different and respond to different meds.

    My opinion is give this a go don’t waste any money or time going down other routes because this is something we’re stuck with the rest of our life there is no cure just a manageable relief from it.

    Let us know how you get on with it information her from each patient is valuable to us , thanks and good luck.

    Frankie

  • nfmiller
    nfmiller joanne06674

    Posted

    Hi Joanne

    Ive been suffering for 11 years. I had a bad experience of robinorole, it made me feel ill and I had to stop taking it. I've been on pramipexole for most of the 11 years. When you start, one tablet taken a couple of hours before bedtime should get you through the night. Like most of these drugs there's a downside. One is augmentation, which means that the longer you take a drug, the more you have to take. I'm now on 3 x the original dose and have to take it about 4 hours before bed! I prefer that to RLS though. Oh for a cure.

    Norm

  • Chocolate23
    Chocolate23 joanne06674

    Posted

    hi. I have had RLS for years but have not (luckily) progressed to needing medication. I can USUALLY control it through stretching, cold compress, freezegel and distraction techniques. Its hard and sometimes I want to chop my legs off but 75% of the time it suffices

    Its such a horrible feeling/sensation that my heart goes out to fellow sufferers

    Good luck

  • alberto17696
    alberto17696 joanne06674

    Posted

    Hello all,

    My experience with medications (RLS) that did work fine for QUITE SOME TIME is this:

    dipyrone (drops), a pain and fever reliever taken before bedtime.

    It is not working anymore, as I believe my organism got used to it. It may be a shot in the dark for you, but why not try …. ?

    Sorry for my non colloquial English

  • phazie
    phazie joanne06674

    Posted

    If your MD said you have RLS then why didn’t he/she prescribe medication to help? If you truly have RLS then you will only have relief with medication (usually Requip or Pramipexal). I hav had RLS for ten years and prescription medicine is  the only thing that works most of the time. I take Ropinirolev(generic Requip) and even then I have problems when I first lie down at night. It seems to be essential that I take the medicine exactly on time so I use an alarm to remind me. This is a terrible disease and it is relentless. I wish you the very best in finding a solution that works for you.
  • phazie
    phazie joanne06674

    Posted

    I hae had RLS for 7 years although it sometimes seems like 70 and  Take ropinirole to control it.I must take the medicine exactly on time (especially in the evening for it to work. It takes 2 hours for ropinirole to work..  

    I also take gabapentin at bedtime. Best of luck in finding a solution that works for you.

     

  • lucy90980
    lucy90980 joanne06674

    Posted

    Hi joanne

    If it is RLS you have then my heart goes out to you!! 

    It is by far the worst feeling and as extreme as it sounds it ruins my life, I have tried everything from tonic water to magnesium and nowim

    Under a neurologist who prescribed me ropinorol which does relieve it but I’m now struggling with augamentation and take a high dose. 

    I wish there was a cure!!! 

    Good luck 

    Lucy x

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