Q. I know I need to tell relatives that I have MH, what should I say to them?

A. It is essential that they are aware that the problem is potentially very serious. You might find this letter of help. Click here

 

Q: Inheritance – can it ever skip a generation?  Is it always hereditary?

A:         MH is what we call an autosomal dominant inherited disease.  This means that both sexes can be affected, and only one of the pair of genes needs to be present for the condition to be seen in an individual.  This also means that the condition does not skip a generation.  It means that first degree relatives (parents, siblings and children) of an MH susceptible individual all have a 50-50 chance of inheriting MH.  (See our section on Inheritance on the ‘About MH’ page which will explain this in more detail)

 

Q: How important is it to have a muscle biopsy if someone in the family has MH?

A:         We believe it is very important.  Some people, who do not like the idea of a biopsy, prefer to assume they are positive.  However, if they went for the biopsy test when called for, they would receive a definitive diagnosis.  Afterall, if they were negative, they would not need to worry about MH again – and neither would their children.  A lot of people who put off the test, decide to have it done when they become parents themselves, but they may have been worrying about it unnecessarily for years.

 

Q: How accurate is the muscle biopsy?

A:         The muscle biopsy is the definitive test for MH.  The protocol for the test is used throughout the European MH Group which enables them to undertake quality control on the test and continuously verify their results. 

 

Q: What is progress/status of a blood test vs. a muscle biopsy?

A:         The muscle biopsy is still the definitive test.  However, for some families, it is possible to have a blood test to see if any of the agreed diagnostic MH genes are present.  If that is the case, then someone can be diagnosed as positive.  However, it is very important to realise that if the test does not reveal one of the agreed genes, the person cannot be called negative.  They may have a gene which has not been found yet.  This person would still need a muscle biopsy.

 

Q: What are the triggering anaesthetics?

A:         A reaction is likely to be “triggered” by 2 types of anaesthetic agents, the muscle relaxant suxamethonium and all the inhaled agents (the modern versions of ether).  As anaesthetics change, it is not sensible to give a specific list, rather to make sure an anaesthetist is warned of your susceptibility, so they can treat you accordingly.

 

Q: How aware are hospitals and ER personnel of MH? If I went to a hospital other than my normal one, could I feel confident?

A:         All anaesthetists in this country should be well aware of MH.  It is unrealistic to expect all doctors to be familiar with MH, so it is very important that you always carry a warning card and/or wear a disc or bracelet noting the problem.  The professional can then contact the MH Unit for advice on dealing with you.  This applies whether it is your local hospital or one elsewhere in the country.  You should always warn doctors of your susceptibility to MH and if going in for a planned procedure, let them know early on – before you are admitted - so that they can be prepared.  BMHA does provide translations in other languages which members can take with them when travelling abroad.

 

Q: If I am susceptible to MH, can I still  be a blood or organ donors?

A:         MH is not transmittable via the blood, so there is no problem being a blood donor.  Nor is there a problem if you want to be to be an organ donor as MH is not a condition of internal organs. 

Q: Hot climates?

A:         MH patients are not advised to alter their normal activities.  However, as with all individuals, care must be taken when doing heavy work/exercise in hot, humid environments.  Heat stoke which occurs when exercising in hot, humid conditions with heavy loads such as in Army exercise training and exertional rhabdomyolsis which is severe exercise causing muscle breakdown and release of myoglobin have been linked to MH. (See Association Conditions on our ‘Screening’ page)

 

Q: Is there a link to MH and other serious medical problems?

A:         The only truly associated condition is central core disease (CCD) which is also inherited and located close to the RYR1 gene. It should be emphasised that the vast majority of MH patients do not have CCD and not all CCD patients have MH.

Some other conditions that may be related to MH are heat stoke which occurs when exercising in hot, humid conditions with heavy loads such as in Army exercise training and exertional rhabdomyolsis which is severe exercise causing muscle breakdown and release of myoglobin. MH patients are not advised to alter their normal activities but, as with all individuals, care must be taken when doing heavy work/exercise in hot, humid environments.  (See Association Conditions on our ‘Screening’ page)

 

Q: How long is the Waiting List at the MH Unit?

A:         The waiting list is variable.  It depends on whether a patient is awaiting surgery.  It is shorter than it used to be and is now around 3-4months on average.  The MH Unit try to keep a list of telephone numbers so they can offer short notice appointments to fill in cancellations.

 

Q: I’ve heard it is more common in men, is this true?

A:         MH appears to occur more frequently in males, although this probably just reflects the type of surgery and therefore anaesthesia males more commonly get, rather than a true sex difference.

 

(Answers to all the frequently asked questions above have been checked by the Leeds MH Unit.)

 

 

malignant hyperthermia, malignant hyperthermia association, british malignant hyperthermia association, malignant hyperthermia, malignant hyperthermia association, british malignant hyperthermia association, malignant hyperthermia, malignant hyperthermia association, british malignant hyperthermia association, malignant hyperthermia, malignant hyperthermia association, british malignant hyperthermia association