ETOLY Posted March 2, 2005 Report Share Posted March 2, 2005 Hi,I noticed in another topic string that Tearose's sons have malignant hyperthermia. I also have a close relative with malignant hyperthermia. We know that it is genetic, but no one else in the family is known to have it. I have been looking to see if there is a POTS - Malignant hyperthermia connection. Does anyone else here with POTS have a relative with Malignant hyperthermia?Thanks,ETOLY Quote Link to comment Share on other sites More sharing options...
blackwolf Posted March 2, 2005 Report Share Posted March 2, 2005 Yes, my grandmother and one of my aunts, both one my mother's side. Interesting.blackwolf Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 2, 2005 Report Share Posted March 2, 2005 ETOLY, as you may know, it is not easy to dx. malignant hyperthermia.(MH) It is often not seen unless someone has experienced general anesthesia problems/death or if someone has suffered heat stroke. You may have more people in your family who are MH susceptible and just are not aware of it. The Malignant Hyperthermia Association of the United States is athttp://mhaus.org/index.cfm/fuseaction/Cont...PagePK/Home.cfmI did my time before I became ill with POTS as a volunteer and naturally learned all I could. At that time, the genetic marker was suspected to be on chromosome 19, the ryanodine receptor. In my opinion, there are mechanisms in the dysautonomia cascade that are similar in the MH cascade. On a much less tragic level, but they sill are similar. It would be of interest to see if those with Hyperadrenergic pots get elevated CPK levels as do those who are experiencing an MH episode. Meaning are muscles "breaking down"...?sincerely, tearose Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 2, 2005 Report Share Posted March 2, 2005 I'm not aware of anyone in my family with MH--and all my blood relatives have had general anesthesia, as have I.Nina Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 2, 2005 Report Share Posted March 2, 2005 Just a note: Those who are MHS (susceptible) may not trigger the reaction on the first exposure to a general anesthetic. Similar to someone being exposed to an allergen and only after several exposures will show symptoms. Also, some people will do fine working out in the heat and then only under certain extreme circumstances will have a heat stroke experience. We really need a blood test for this so all people can be tested during say a "pre-op lab workup". tearose Quote Link to comment Share on other sites More sharing options...
ETOLY Posted March 2, 2005 Author Report Share Posted March 2, 2005 Hi,Thanks Tearose (and blackwolf and Mighty Mouse) for your responses. I know that malignant hypothermia is fairly rare and since no one else, except one relative, has had a reaction to anesthesia...that we know of...we just have never been sure which side of the family it comes from. We are aware of the tests that can be done to see who carries the gene, just don't believe it has been done yet. It is interesting that three people on this site..so far...have both POTS and malignant hypothermia in their families though. Not sure if there is a direct connection, but since MH is fairly rare and POTS, more common, but still not widespread....there may be some relationship there. Etoly Quote Link to comment Share on other sites More sharing options...
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