Malignant Hyperthermia

I have suffered from RLS for at least 50 years but I also have a genetic condition known as Malignant Hyperthermia which means I am unable to take certain anaesthetics. My daughter who has also been tested positive for MH also suffers form RLS but in a mild form at present. My son who was tested negative for MH has not shown any signs of RLS. Just as a matter of interest I wondered whether any other members of this forum also suffered from this condition.

9 Replies

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  • I have not come across anyone having both conditions and to my knowledge there is no connection x

  • I have suffered from RLS for close to 40 years and the only releif I have had is with the Parkinsons meds given off label until recently, when Requip was approved for RLS spicifically. I have had Fibromylgia as long as I can remember. Aching in the long bones, muscular cranps and catches as well as random pain. I love the heat and hate cold, so hyperthermia isn't a real problem with all RLS sufferers. I would like to hear all the other conditions that may cause RLS. Perhaps there is no one cause, but a multiplicity of conditions and RLS is a symptom of all of them.

  • Hi how do you find out if you have mh

    Is it related to rls

  • Unfortunately discovery in our case was somewhat traumatic, we had no idea what it was until my daughter had an operation and MH kicked in with what could have been fatal results. Fortunately the anaesthetist knew all about it and was able to administer the necessary drugs to counter the effects. At that time it was not widely known and a number of deaths in the operating theatre might have been caused by it. Now it is included in an anaesthetist's training and the appropriate drugs are usually maintained in the operating theatres. On discovery in a family all other members of that family not only direct but indirect i.e. cousins etc., are invited to Leeds to undertake a muscle biopsy which will show whether they are positive or negative. Research is being undertaken to see if a blood test can be used but as I understand it, it is not 100% accurate at the moment. The reason for the family investigation is because it is genetic and may, or may not be passed on. It is possible to have surgery but all equipment including pipes tubes etc., must be cleaned of all traces of the offending anaesthetics and a different anaesthetic used. I hope this helps and to reassure you it is relatively rare affecting only a small percentage of the population but not, I believe is it found in Asian or African families but I may be wrong in this regard. For full information, up-to-date and more accurate check is out on the internet.

  • Are you taking or have toke ropinirole before as when I am taking it I wake up gasping for breath does this happen to you I only been on them for to nights don't no whether to keep taking it or not as it works but freighting wen wake up

  • Hi, this is not a normal side effect of Ropinerole, Could be caused by sleep apnea see your doctor it needs to be checked out

  • Ok this as never happened before though only wen I toke the ropinirole it seemed to happen. Can I ask wen you have rls happening to you what do you feel symptom wise just want to no what happens to you to see if it's the same as me or if rls can be different in different people

  • I am sorry but I find the sensations and feelings in my legs and arms impossible to describe even to doctors. I just know I have to stop the sensations and can only do that by moving

  • Are you taking or have toke ropinirole before as when I am taking it I wake up gasping for breath does this happen to you I only been on them for to nights don't no whether to keep taking it or not as it works but freighting wen wake up

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