Hello again everyone,
This site is such a good source of help, I thought I'd reach out again.
I took mirapex 0.375 we for three days to see if it's help with my symtoms. It did not.
My symptoms were fasculations, pins and needles and shivers of energy? Down my legs.
While on mirapex I developed another symptom! When trying to fall asleep my hands get very buzzy and almost itchy and crawly. This was not here before the mirapex.
Does anyone have any idea what is happening to me?
For me, this escalating body sensations and no diagnosis is really making me question the worth of life.
I don’t think it’s RLS because you don’t get the unbearable need to move. Also, doctors use a dopamine agonist like Mirapex as a diagnostic tool- if it works straight away- it means it’s highly likely to be RLS. The fact it’s not helped at all indicates that you don’t have RLS.
Thank you Joolsg, I don't think what I had was RLS either but I don't know what to think about this new crawling tingling feeling that I have developed in my hands while on mirapex.
Hi Sarah, I note you posted 23 days ago about taking Mirapex and it didnt work.
I think it was fairly clear then that you have some other condition that needs diagnosing. I imagine you haven't been able to see a neurologist since then, but that may be your best bet to get a diagnosis.
In the meantime in view of your escalating symptoms which are very real, I appreciate that this is very worrying.
I do think however, that there is element of health anxiety in your situation. Certainly anxiety can cause neurological type symptoms and an over attention to symptoms and that can lead to questioning the value of life.
I'm not all suggesting that it's all in your mind and think you should pursue getting a medical diagnosis for your neurological condition. However you will benefit from some help with your anxiety.
You may already have some self help strategies for coping with anxiety. I do still suggest you discuss your anxiety, specifically with your GP.
You might also find this link.informative
rarediseases.org/rare-disea...
Thank you for replying Manerva, I basically have had thoughts that I'd I have RLS this bad, all day and with no response to mirapex that it is the end of the line for me and I should just give up. I have recently had thoughts to act on these but I am going to the doctor to see about my anxiety.
It isn't the end of the line, I appreciate it might feel as Mirapex didn't work then there's no other option. Mirapex not working simply means you probably don't have RLS.
I hope your doctor can help get to the bottom of this and in the meantime, some help with anxiety would be of benefit.
THAT IS TRUTH. Dr. Buchfuhrer has always said that. BUT, I do have to say, dopamine meds never worked for me because I could not keep them down. The extreme nausea kept me from ever knowing IF they would work for me.
Sarah, its not RLS, and you trying meds for it and them not working is just adding to your anxiety. You need to see your doctor, and tell them its not RLS, and they have to find what is going on with you. x
If you do not have RLS, then why would your doctor put you on Mirapex? I also think you need to DEMAND a better diagnosis. We can only go so far here, since this IS an RLS forum. I am sorry you are having such a hard time. rxlist.com is a great web site to look up meds in general. irlssg.org is the official description of RLS diagnosis. You HAVE to have the "URGE to move that you cannot ignore in all five of the criteria.
Thank you everyone, I went back to the doctor and they said I must keep taking the mirapex as it is certainly RLS and they otherwise cannot help me.
As you would understand, I don't think I can cope or go through this any longer.
My left leg feels like the muscle is going to fire off and is going to jump out of its skin. I have to clench it every time it goes to do it. Which is all day, everyday. It is worse when I'm sitting, obviously because that's when I'm relaxed. The doctor said this is classic RLS and there is nothing else to cause this.
Thank you for understanding me in my time of deep depression and anxiety.
I've tried to get into another practice but they are not taking any new patients in my area and my GP said no more referrals
I'm astonished about this.
Is there only one GP at the surgery you're registered with. If there*s several, you could ask to see another one.
You need to tell them that you cannot bear this any longer. If you are having thoughts that you want to end this, then you need to tell them this. They have to take that seriously.
To some extent, it's now almost irrelevant whether you have RLS or not. If you continue to take Mirapex and it's not working, then it's not working. You need to keep going back and say it's not working.
Don't try to tell them you think it's not RLS, just keep saying the Mirapex isn't working.
Ask them for help with your anxiety.
I did tell them about how my thoughts are becoming quite bad. They told me if I take the medication then the feeling of my left leg jerking out of my skin will stop and I won't be anxious anymore.
They have also said that they would mark me as non compliant if I stop the medication so the other doctors at the surgery will know what I am doing if I try to doctor shop.
What they don't understand is this jerking sensation is not conscious, I'm not moving my leg, it is moving.
It's like when you fall asleep and you jerk bit because I'm awake I can clench my leg and make it stop. The mirapex has no affect on the tingling or twicthing, it sort of slows down the jerking but I feel like it's because it sedates me so so much that I have to sleep for about 16 hours of the 24 hours of the we dosage.
I'm thinking of going to the hospital as I don't feel like I'll be able to get any more help through this gp.
Hi Sarah, again, I'd say that its largely irrelevant whether this is RLS or not. I suggest you do carry on taking the Mirapex, but if it doesn't work, then you need to keep telling them it's not working.
Alternatively, you could try phoning 111, and when they say you should go to your GP, tell them.you have done and they're not listening.
You could try going to your local A&E, but you may find them unsympathetic as A&E is for serious and life threatening emergencies and although I appreciate you are suffering, physically at least, your condition is not life threatening, unless you threaten to take your own life.
You might also think about contacting your local "Healthwatch" organisation who may be able to offer you some support or signpost you to an advocacy service.
You might also consider submitting a complaint to the GP surgery, which you are entitled to do. It seems not only are they not listening to you, they are threatening you. If you're not satisfied with their response then you can take your complaint directly to NHS England (Scotland etc).
Finally, the symptom. you describe of your leg jerking can be a symptom.of RLS. I have definitely had RLS for many years and when I first had Pramipexole (Mirapex) it worked fabulously..
I have had involuntary leg movements as you describe for many years. They twitch, and it can be quite violent. However, I always know when these movements are going to start because I have the unpleasant urge to move preceding the movements. I don't feel the urge to move when my legs are actually moving, because - - - they are moving. Usually when the movements start, I am relieved because I find the urge to move sensation really awful, a torture.
Are you sure you don't get any unpleasant sensation before your legs start to move? It has been your denial that has made me think you don't have RLS. The movements, however, as I say, do sound like RLS.
In which case, I hope you find it reassuring to know that, despite the discomfort, I have never come to any harm as result of them. They are not the prelude to something really awful.
I'm guessing that your anxiety might dissipate if the Mirapex did work, but at the moment it's not.
What dose are you taking and what other medications are you taking?
Hi Manerva,
There is no crawling or electrical sensation in my legs at all. There is just jerking sensation in my legs.
It feels like my leg is going to kick out of the skin. There is no feeling proceeding that. It is constant throughout the day while I am awake, from the minute I wake up to sleep.
I don't feel like I need to get up and move. I just feel like my body is going to jerk without any control if I were to let it. It's like my left leg is going to fire off, jerk out, if I let it
Infact when I go to sleep now I notice they are jerking me awake, but they are constant. Can this just be anxiety?
I am going to go to the hospital because it's getting too much
Dear Sarah, can you take someone with you who will speak up in support of your claims. I always had my husband with me and now I take my daughter. This is Useful in different ways. You have backup for one and if you don’t remember something that was said then your friend probably will. Also you have proof of the whole conversation. As regards your worries you really need to get help as you sound so unhappy and scared. I have had RLS all my life and really badly for the last twenty years. Now in my late seventies I would say that every day is precious to me. Yes the RLS is horrible and at times difficult to deal with but so is any ongoing health problem and severe anxiety is very hard. I am going through a cancer scare at present and trying to keep calm and positive until tests are done but whatever happens every day has something good in it.
What I am trying to say to you is you need help to deal with the anxiety you are obviously suffering. the more anxious you become the harder it is to sort out your difficulties. Take a good friend or relative with you and make the medics really listen. If you need to, you should take notes with you so you will not forget to say something important. We all wish you well.
I am really scared Jelbea. I'm really scared that I can't cope with these jerking sensations and that ending everything would be preferable.
I went to the hospital who gave me some Valium and said I need to discuss it with my gp again. I have asked to see a different gp at the practice and have an appointment in 2 weeks.
I have enough Valium to get me through it but I have to take work off as I can't safety drive anymore with my left leg jerkong constantly
If that's the case Sarah, you might be able to get an urgent appointment.
I'm glad the hospital took you seriously.
Hi everyone, sorry I'm back. I got an emergency doctor appointment as I ended up in a really had place and tconsidered acting on it.
This doctor too has said I have RLS even though I said the mirapex didn't work. I tried my hardest to express it should work straight away but they said no medication works straight away. They are however willing to consider a second referral.
The symtoms of my leg tensing and jerking uncontrollably is now instant, the second I sit or lay down. I literally mean the second I relax. It is all day long from the moment I wake to when I sleep. I can't drive anymore because the jerking influences how I used the pedals.
The doctor had given me amitriptyline.
I haven't started the amitriptyline
Mirapex
Mirapex 
MIRAPEX
Alternating Requip and Mirapex?
Finally off Mirapex!
