Im struggling this week

i have had rls bothering me quite a lot for around 3 weeks now, just seen my neuro, he usually gives me iron, !! and tells my gp to keep me on the same meds, Mirapexin er.

He asked me how i was, i told him the RLS was bothering me quite bad, he chatted for around 10-15 minuites about iron, then tells me he doesnt need to see me again !, so thats it ?? im left with nothing, my gp wont do anything unless the neuro tells him to, im stuck, and dreading terying to see my doctor to ask for help i know i wont get it

20 Replies

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  • So sorry Tallula, its not good when you cant get the help you need. I would go see your doctor anyway, explain the neuro didnt seem to be listening to you, and how your RLS is bad and the meds do not seem to be working. I hope your doctor will listen...

  • thanks, but i wont hold my breathe x

  • I am also sorry to hear this Tallu. It is a rotten illness and somehow we are all in it together. It's a frustrating illness too. The recent RLS UK news letter is useful. It has an article about trying to make your doctor aware of the condition and how disabling it can be. I took it to mine. It is terrible when you are not listened to or taken seriously. I would keep badgering your doctor and perhaps keep a diary for a week and run through it with the doctor explaining how the current meds are not helping you. There are others out there that might help. I do hope that you make some progress with your doctor.

  • Sorry I spelt yout name wrong, Tallula

  • Sorry you are having such a hard time and on top of everything else honey. It's really rubbish knowing basically we are stuck with this cos medical folk won't listen and when they do there is not much they can do anyway. Maybe it's the weather!!!! I'm having a bad time with it too x xxx

  • thanks Dragon, im nervous to even ring my gp, as i know i wont get an appointment, just a ringback call,how they can tell if you well by this i dont see

  • I'm sorry Tallula for this frustrating situation your in, RLS is terrible and it's high time for a solution, but I'm not optimistic about it; so we suffering trough it and with doctors who are most of the time not able to help us. I'm 66 and I'm afraid for the future because we all know that RLS gets worse when you get older, brrrr!! I live in the Netherlands and it's much similar with the UK. I wish you lots of strength with your doctor and the hard time your in now!!

  • thank you, im not optimistic either

  • Take the reins in your hands, phone your doctors, when they ring back, insist you get an appointment, otherwise they will be responsible for the outcome if anything happens to you.

    Be tough with them, sometimes we have too, to get them to listen. They will probably think you are a crazy woman, but if you carry on without help, you flipping will end up crazy without enough sleep.

    Good luck...

  • did ring this morning, but the answer i got is, wait until they hear from the neuro, they ring back, so his letter is more important than my health so it seems

  • Some just havent a clue...!! I am relieved i dont have that ring back at my doctor's, i can phone for a home phone call from him, and talk about my meds with him, and ask for more meds, he will ask how i am doing, what dose i am taking etc etc. I have never seen a neuro, my doctor deals with my RLS.

    I hope your neuro gets the letter soon to your doctor's. But why he couldnt tell you what he was thinking at your appointment is beyond me, or whether he was thinking of changing your meds or not.

    Hang in there... :)

  • When my neurologist put her hands up and said "I'm afraid we have came to the end of the road" I just started crying and told her I was going to commit suiside , I know this sounds drastic but that is how I felt at the time. This is when she said I was entitled to a second opinion, so of course I jumped at the chance, I was "lucky" that I waited over 9 months for an appointment and because of this because of the new rules they had to send me to see a private neurologist and within 5 minutes he diagnosed me with rls, and he knew about another neurologist who knew more about this disease, who has been wonderful and is trying his best to get me sorted out with the correct medication. And he also wants me to be admitted to his sleep clinic in Edinburgh to see just how bad my symptoms really are. It is your right to demand a second opinion, but before you ask your doctor research any rls specialists in your area and tell your doctor that is who you want to be referred to, maybe that way you will get someone who understands the torture you are going through. Good luck

  • he wont even speak to me until they have the letter from the neuro, and i have asked to see someone else, but i cant just turn up at another neuro, my doctor will not refer me to anyone else, and hes the head of my practice, so none of the other doctors will go against him, and its not an option to change doctor, i would be a lot worsre of if i did, mine is supposed to be the best one in the area

  • Tallula, I'm sorry to hear about your RLS battles with our medical professionals. Last week was my most horrid week for some time: wandering around at 2-3am, feeling like I'm about to go mad. My ferritin level has gone up, but to no improvement wirh rls. I was also 'signed off' by a rheumatologist without any review of his suggested treatments. (btw totally useless - vit D & amitriptyline). Having to prove you are very poorly is appalling. It is like having to prove your innocence in a criminal trial, without having a defence barrister. In our case we have no-one to stick up for us, we have to be advocates and patients. I get so frustrated when we are told, 'Oh, but it's not life-threatening'. No, but when it impacts so severely on our lives - work, sleep, relationships, pain, sanity etc; we should be afforded more slack and listened to. Sometimes it is hard to be a pioneer when you feel so miserable. Keep pushing, if you can, Tallula, and everyone xx

  • thanks genorm x

  • You have my sympathy Tallula - I hate the 'ring back' system -you always have to ring them back again anyway. I was in a similar position a while ago [not with my RLS] waiting for a consultant to reply to the GP. I badgered the consultant's secretary many times asking " Has he sent the letter yet". Either she took pity on me, or got fed up with me pestering, [I prefer to think the former] , but who cares -it worked. It's worth a try. Your GP probably won't tell you what he's thinking -as he probably doesn't appear to know what he's thinking until the neuro tells him!

    Good luck XX

  • Well i wouldnt mind the neuro not "needing" to see me again, but ive had 2 strokes, and gor RLS 24/7, so how he works it out i dont know, im lost for words really

  • Tallula, What does your GP have to say about this?

    You probably are firm in telling the Neuro the ways

    that RLS is affecting your life.....

    It stinks that you are getting a bum kind of treatment. RLS

    is very serious and ruins people's lives if they go a couple

    nights without sleep...especially if you have a job..or other

    responsibilities.

    I did have one male doctor that told me that eventually I will

    become so exhausted that I will shut down to go to sleep.

    I lived that way for a long time and it changed who I am,

    my relationship with my immediate family members who

    avoided me and disliked the sleep deprived me.

    Believe it or not, my Rheumatoid Arthritis Doctor was the

    one who listened and started prescribing better medicines.

    My family adores that doctor who seems reluctant to prescribe

    narcotics but he sees the reason to do so...very unlikely doctor

    to treat and know about RLS...but he does. I am also on

    the generic Mirplex, the verdict is out if it's helping or not.

  • i did ring the doctor this morning, but they wont even talk to me until they get the letter from the neuro

  • This sounds bad, how can your GP not support you in some way? Sounds like you need to change your GP. keep your chin up and dont give up you have a right to be heard!

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