June Robertson

Oh yes, and wheat will do it every time. Oats not too bad.

Sometimes walking briskly(I am on minimal Mestinon these days) will give me a tight chest. Worse since 2 doses of Covid. My blood pressure has been a bit chaotic since Covid and I’m now on the fourth type of BP meds. Very hard to determine what is variable BP, what is MG and what is the result of Covid and subsequent pneumonia….

Oh my goodness Mick, I can sympathise. I’ve had MG for 60 years and was married for 26, then separated. My husband was very kind and thoughtful and I was so grateful, but then I got chronic fatigue after a virus and I think that was just too much! I was in a lot of pain, weak and not a cheerful soul. Came time for our 25th wedding anniversary and…[Read more]

I was a shy eighteen year old attending a dance and just getting used to being a myasthenic. A horrid boy with a red sports car told me I danced like a spastic!  I now pre judge anyone with a red sportscar! That was sixty years ago and I still feel pain at the thought of my embarrassment, bewilderment and grief.  Many of you will have had s…[Read more]

Nestor, that is interesting re your sensitivity to dairy and gluten. My homoeopath certainly advised me to avoid both and it made a huge difference, especially the avoidance of wheat. So good to know how well you are.  June

I believe there is no reason why alternative therapies cannot be successfully combined with medical treatments and in my case I have used both. I was so impressed by the help I received from a homoeopath that I trained in herbal medicine, massage, kinesiology, reiki and some oriental medicine techniques.(My background is psychology), plus I did…[Read more]

had MG for over 25 years when I visited a classically trained homoeopath in Australia where I live. I worked with him for several years and followed his instructions carefully and gradually was able to come off Mestinon and gained sufficient strength to become a massage therapist! I had been on approximately 5  x 60mg Mestinon prior to this.…[Read more]

I have never smoked, nor has anyone in my close family. I was diagnosed at 17 years (now 78). When I was 22, two years after my thymectomy I worked for a scientific research organisation in Australia. I was reasonably well (maybe 6 x60mg Mestinon daily) but had a serious, but temporary exacerbation when exposed to nicotine sulphate which was used…[Read more]

Barry it depends what the trigger was. If it was say, a drink of tonic water, maybe a couple of hours. If it was too much wheat, maybe a day. If it’s stress, avoid it if possible and try not to anticipate it as the fear can tighten your throat muscles and also affect your swallowing. I lost my voice once during a very difficult life event. What…[Read more]

I have had MG for 60 years. What will give me a flare up is:
1. getting chilled or maybe overheated
2. drinking anything with quinine in it, say tonic water or bitter lemon
3.getting suddenly stressed, or being frightened
4.being close to cigarette smoke
5.touching or breathing in agricultural chemicals
I am best if I don’t eat wheat, or too…[Read more]

Two years ago I had my first ‘flu shot ever and contracted shingles four days later. Because of that I did not have the shot this year but got the ‘flu for 3 weeks. Then two months later got Covid but was not very sick as I’d had 2 Astra Zeneca shots(I’m in Australia) then 2 Pfizer boosters. I also had the Lagevrio anti viral which worked quickly…[Read more]

I had 4 vaccinations and I wasn’t very sick. I immediately went on the antiviral Lagevrio which helped. But after it was over I was tired; polymyalgia rheumatica was triggered(it had previously come on after a bad ‘flu), then a few weeks later breathlessness and pneumonia. I don’t know how much blame to put on Covid. It’s now 2 months since I…[Read more]

I suspect it might be. Certainly the autoimmune aspect could well be. I was diagnosed at 17(I am now 78 and well with regard to MG) but I think my paternal grandmother was an undiagnosed myasthenic as she was bedridden and weak for the last few years of her life and her eyelids were always at half mast. She died before Iwas diagnosed so we…[Read more]

I don’t know for sure, but my paternal grandmother who died at 76 in 1956, was bedridden for three years. She was said to have heart problems, and I’m sure she did, but she had “drooping” eyelids for a long time, so I wonder if in those days she was undiagnosed. I was diagnosed in 1962, and it was said I was one of only very very few in Australia…[Read more]

PS to my Supplements and Vitamins submission. I never never drink tonic water or bitter lemon which contains quinine….my eyelids will be at half mast within minutes! I avoid licorice which somehow interferes with the neurotransmitters, I avoid nicotine as I once became very myasthenic when working in a science lab where the cabinets were sprayed…[Read more]

I have been a myasthenic for sixty years. I trained as a naturopath/herbalist to help myself and others. Having been very very ill at 18 years and improved by thymectomy at 20, I have looked after myself well and even became a massage therapist at 50 years of age. I don’t drive because of potential double vision, so walk everywhere which is…[Read more]

Indeed it is Andy. I am an Australian myasthenic(of 60 years duration) and have travelled that route(in reverse) numerous times by myself. Also to Japan, Indonesia, Greece, the Continent….I wear a Medic Alert bracelet which registers a phone number in Australia with links to my doctor. It also says “Myasthenia Gravis. Caution sedatives,…[Read more]

I was in close contact with polio at my school in 1954 and in 1957, but showed no symptoms then I had the Salk vaccine in Australia about 1958. There may have been hints of MG after that, but I was diagnosed and severe in 1962. I did not have the boosters. I did get MG a few weeks after a Hepatitis vaccine, but whether this was a cause I don’t…[Read more]

Hello……I had two Astra Zeneca shots(I am in Australia)….felt a little weird in the head after the first one, but OK after the second dose 3 months later. Pfizer for the booster 6 months later again meant lots of sneezing for a few hours then fine. This after noon I have my second booster…Pfizer again.I don’t anticipate problems at all. I…[Read more]