Carole Lawrence
Forum Replies Created
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My Neurologist here in Australia wants me to wait until Novavax vaccine is approved in Australia as he does not want me to having AZ, Pfizer or Moderna, as he said he has researched all the available Covid vaccines in Australia at present and only the Novavax vaccines ticks all the boxes for safety for a Myasthenic according to him – so it’s a waiting game for me as it is not scheduled to be approved for use here in Australia until November!
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Thank you Scott. I have often wondered about that myself re a chemical exposure possibly causing MG. When I was walking in my high school grounds in the late 1950’s here in Australia, a crop dusting plane that had become disoriented accidentally sprayed me with DDT! I was covered in it from head to toe! I later asked my Neurologist when he asked me had anything strange happen to me when I was growing up and at what age did I first notice MG symptoms. When I told him that I had been sprayed with DDT at 15 years old and that was about when I first noticed strange symptoms that had no explanation – such as suddenly collapsing after a foot race and being unable move or stand up or to see properly due to double vision, he immediately dismissed it as not having anything at all to do with me developing MG. At the same time that I was sprayed with DDT so were other locals in my small country town and 9 months later three women gave birth to grotesquely deformed babies who died! The Government when contacted about the 3 birth deformities 9 months after the 3 mothers had been accidentally sprayed with DDT said it was just a coincidence! I really do hope that more research goes into this possibility of exposure to chemicals being at least one cause of MG.
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Courtland: ‘though generally I know that if I try to talk for more than 20-30 minutes I will have difficulty.’This is very common with Myasthenia Gravis, it’s best not to talk for too long a time as you have to remember that you are using muscles when you talk [jaw and tongue and lips] and it will fatigue you. Also try not to stand for too long either as that will fatigue you as well. I always top myself up with Mestinon 10 mg if I have to talk on the phone for too long as my voice just fades away [another common symptom]. As I have been diagnosed for just over 48 years I have been through so many confusing happenings that I have gotten used to them and just accept them and try to find a way to alleviate them [rest is one of the best ways to alleviate fatigue] also if you are concerned about something strange happening to you please talk to your Neurologist for advice on how to handle it.
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I take motilium tablets 10 mg [domperidone] three times a day about 15 minutes before eating. It helps me to swallow, but I must admit that sometimes [usually when I am feeling tired] they don’t always help and I have to spit out whatever is I my mouth into a napkin, then wait a bit longer and start to eat again. If I am out with others I have to leave the room to save them embarrassment, spit up in a sink, wash it out then wipe my mouth and then come back. My GP said I should try not eating for 1/2 an hour after taking the motilium tablet and it usually works. I just thought you could mention the motilium tablets to your GP for his/her advise as to whether to take them [they are on prescription only]. I have been diagnosed with Myasthenia Gravis for 48 years! A very long time indeed and I have had many episodes with it along the way, but I am 77 years old now and managing fairly well with MG, asthma, osteoporosis and osteoarthritis, plus I had a hip replacement last year with an Orthopedic doctor who dealt in ‘difficult’ patients and my Anesthetist specialized in treating rare patients as well and all worked out fine!