New diagnosis

Hi

I am 67 and retired. A few weeks ago I noticed my legs flicking up when I tried to sleep. After a few days, and with increasing tiredness, I visited my doc. To cut a longish story short I had various blood tests and he concluded I had primary RLS with periodic limb movement--all totally out of the blue and idiopathic! I was on 2mg of clonazepam but have now cut back on this and now have pramipexole. After a lot of reading around I now realise that I have joined quite a big community!!!!

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  • Welcome Martino, I am wondering if you went to see a doctor that had a good background knowledge of RLS and PLM. Many doctors have no idea what to do when a patient describes their symptoms to them. Anyway, thank goodness you appear to have been diagnosed fast and have found a med that suits. Long may that last.

    If you have not done so already, you may like to visit rls-uk.org that has recently updated its website and has started up a forum on there too. The forum only started up in March and is slowly growing in numbers. It would be great if you could post your story on there too, to give hope to others starting out on the often long, frustrating journey to get diagnosed and to be prescribed drugs that suit their symptoms.

    What makes it complicated, even with a competent doctor, is that not all meds help everyone's symptoms so it can be trial and error for quite a time.

    Thank you for sharing.

    Kaarina

  • Thanks very much Kaarina. Initially the doc said that I was having an adverse reaction to Gabapentin which I had been taking for about a year for another reason. I was only on a small dose but getting rid of that did not help a bit. He then put me on Clonazepam which was great to a point as I could then sleep but it left me wiped out. I will go on to the RLS-UK site and in fact have in front of me the RLS-UK membership form. I think the pramipexole is helping but my sleep is poor. My painful legs wake me up!

  • Hi martina, its unusual for RLS to come on so quickly. Has your family a history of RLS..? Is that why your doctor has said you have Primary RLS. How did he know you also have PLMD. As that is usually diagnosed in a sleep study.

  • Thanks Elisse. As far as I can remember there was or is no-one in the family with RLS although sadly several have MS. My mum died with it and my sister is in a bad way. After doing the full bloods I think the doc thought all the evidence pointed to RLS. The limb movement was the worst aspect and the medication has this largely under control but my wife has told me that my legs are moving quite a lot when I am asleep--which is usually only in the first few hours of the night. My legs are very painful in the mornings so the standard routine is a couple of co-codomol when I wake

  • Martino, You are one of 10% of the world population with some degree of RLS. I am 78 years old and have suffered for 35 years. I am now at 24 hours a day if I took no medication. I have had the good fortune of being treated by specialists at Mayo Clinic in Phoenix AZ and Northwestern University Hospital in Chicago IL and they are puzzled about the cause and treatment it is, try this and then try that, There is no set treatment and that is the problem, no research is being done and treatment is mostly ''off label'' meaning the meds were for another disease and it was discovered they are effective against RLS. Mostly Parkinson's meds.

    Good luck getting relief,

    Windwalker

  • Hi Windwalker-having read various accounts of other people's experiences I am very fortunate not to have had this before. Looking back I have had painful legs for quite a time but I don't have the constant need to move that many people have. My biggest problem was the myoclonic activity. About every minute or so for what seemed like ages my leg would jump. It was rare for this to happen in the morning but it did. At least that is not happening in the same way now so hopefully the pramipexole is working!

    Best wishes

    Martino

  • Martino , if you don't have the urge/need to move your legs as you say then you do not have RLS.What you are describing I PLMWA which is Periodic Limb Movement Whilst Awake.When you are kicking in your sleep this is PLMS which is Periodic Limb Movement Sleep.Different conditions to RLS but many of us have both.The need/urge to move legs is absolutely crucial to a RLS diagnosis .Good luck

  • That seems awful strange!

    I mean sure I guess you can diagnose quickly but to just develop 'idiopathic' RLS in your 60's SEEMS a tad odd.

    For my money I would want to double check that iron profile. What can happen is that some blood tests may show normal levels however there is a more in depth test that checks something else - I used to bloody know the name of the blood test - which can show up low iron even if other tests are showing good levels. Now I may be confusing Haemoglobin tested in a FBC, (Full Blood Count) which can indicate good levels of iron but the Iron profile shows more. Worth double checking as Iron supplements are a hell of a lot better for you than clonazepam and pramipexole.

    With a lot of factors that cause/influence RLS it is always worthwhile, (imho), to investigate very throughly - I don't personally believe a lot of Dr's do this although there are always exceptions to the rules. Woth looking at other drugs that can cause RLS symptoms or exacerbate existing ones, (although your Dr should be aware of that).

    Good luck.

  • Hi Raffs-I very much agree. When the doc prescribed the pramipexole I was most reluctant to take it as I noticed a possible side effect was dyskenesia. My wife has dystonia so the last thing I would have wanted was anything like that. I am a regular blood donor, last one two months ago, so I was dubious about the possibility that low iron may be a factor. I was simply told by the doc that my iron level was ok so when I see him next I will talk about this a bit more

    Best wishes

    Martino

  • Hi Martino ,you mentioned dyskenesia is that when you start nodding your head,I was on one of the Dopamine tabs and that's what it did to me my head would just start nodding when I asked the doc about it he said nothing I can do about that and when you think it was him that had given me the tabs,came of them and am now on Tramodol am getting on not to bad x

  • The name of the blood test needed in RLS patients is Ferratin iron which is iron storage it needs to be above 70.

  • Yes, doctors SHOULD be aware of drug side effects, but they often aren't. With leg pain, I am wondering if your doctor has you on cholesterol meds like Lipitor or Crestor. They are absolutely notorious for muscle damage that generally starts as leg pain, and RLS can be a side effect as well. Since so very many people take them, I thought I'd mention statins specifically, particularly with your leg pain.

  • Hi

    Thanks very much. Fortunately my cholesterol is ok and confirmed by the recent various blood tests. I can eat clotted cream and scones without fear which is very nice as I love them!!!

  • How sweet it is!!

  • Hi Martino. Like you I developed my RLS when I was 59, now 63. It happened out of nowhere after I had an MRI and the dye they injected gave me a horrible reaction and had to be given an extremely high dose of Benadril. While the Benadril was wearing off is when the restlessness started in my whole body. I told my doctor who happen to be familiar with RLS ans recommended me to a neurologist. As you might have found out by now, most histamines are like poison to us, they increase the RLS discomfort. The neurologist put me on Gabapentin that DID NOT work for me and made me gain weight very quickly. By chance one day I was put on TRAMADOL for another problem and like magic it took all the RLS discomfort. I mentioned it to the doctor and now that's all I take, 50mg. at 7pm and another at 1am since I had a little bit of augmentation. It works very well for me but not for many. Maybe you should try the TRAMADOL, I swear by it as well as others that also take it, it won't hurt to try. Good luck. My 100 mg. is considered a low dose and like I said, I split the dose at two different hrs and I get through the night with no problems. I also don't have anyone in my family with this problem, I've asked and no one even knows what it is. Not everyone gets it by inheritance.

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