June Robertson
Forum Replies Created
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Yes, it’s a vexed question re vaccines and autoimmunity. I was MG triggered (probably) by a hepatitis vaccine in 1962 and had a thymectomy in 1964; I do think there were hints of MG prior. The surgery helped as did naturopathy and homoeopathy and I eventually stopped Mestinon for a few years and became a massage therapist! In my late 70’s I take a little Mestinon. I’ve had 2 x Astra Zenica, 3 x Pfizer vaccines with little myasthenic troubles, but have had mild Covid twice despite being careful, and subsequently, vascular issues ( BP issues difficult to control) and aches and pains which might be polymyalgia rheumatica. Who know if it’s vaccine related or just my age …almost 80. When I take my next vaccine, I will do what I usually do, take KI Immune Defence, which contains Astragalus herb, an adaptogen (Martin and Pleasance Pty Ltd, Melbourne, Australia) for a week before and a week after the booster. Adaptogens help the body cope with stress and return to homoeostasis. I believe they help me, not sure about you.
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I have been taking Mestinon for over 60 years. Eyelid twitching is an occasional occurrence. I reduce the dose slightly and it ceases.
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I was diagnosed in 1962 at 17 years of age, was very ill, taking 20+ 60 mg Mestinon tablets a day, plus other tablets called Mytelase(don’t think they are about any more) and Probanthine for the inevitable pain from overdose. I had a thymectomy(no tumour) at 20 years and gradually improved over about four years. Later I trained in naturopathy and herbal medicine and also became a massage therapist. In also used homoeopathy and natural remedies and I never took cortisone. I am now 79 years and only use 20-40mgs of Mestinon daily. I watch my diet carefully and find I worsen with wheat. Never ever take any drinks with quinine as the eyelids become half mast in 20 minutes. Covid was a bit problematic. I avoid any garden chemicals or insecticides which are neurotoxic. Don’t despair. It is a frustrating condition and your friends won’t necessarily understand.All the best!
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Swimming through treacle.
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Oh yes, and wheat will do it every time. Oats not too bad.
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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….
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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 similar as it IS a bewildering and variable disease and people don’t understand.
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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 homoeopathic first aid which is useful for acute situations. There is no simple solution for MG and I feel sad reading of the great difficulties which many of you have. I had already had a thymectomy many years before I visited the homoeopath, and had it not been for that medical intervention I probably would have died. Homoeopathy is a subtle energy medicine(no, not “just water”), has been around for well over 200 years and works on the principle of “like cures like”. It looks at the causes of the symptoms, both physical and mental. Because the remedies are tailored to the individual, the remedies chosen for you might be different from those chosen for me. That is why you would need a classical homoeopath to help you. There is an International Academy of Classical Homeopathy which, I imagine would help a patient find trained practitioners. Homoeopathy is well known in Germany, in India and the UK, and I believe is used by the British royal family.
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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 5Â x 60mg Mestinon prior to this. (Before the thymectomy 20 years before, I was taking 20 tablets+ per day so I had been a seriously ill person). I had never ever taken Cortisone which probably would have made my treatment much more difficult.
Yes, it can work, but you need a skilled practitioner and you need to understand the principles of homoeopathy and to be patient. Some years later, and now at 78 years, I take tiny amounts of Mestinon when needed. I think Covid may have added to my autoimmune difficulties.
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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 to “sterilise” cabinets for experiments. I recovered quickly but noticed in very smokey social environments I would become weak.
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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 much other gluten.
Minimal alcohol only. Keep off licorice.
I take astragalus a herbal product as it modifies the immune system. -
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 and well. But after that an arthritic disorder was triggered(Polymyalgia?) which is painful and unpleasant. Then I got pneumonia which made me very tired and breathless. I then had 2 lots of antibiotics. What a tale of woe! MG is the least of it. I’m now taking lots of powdered vitamin C, some Vitamin D and slippery elm every morning to repair the gut lining after antibiotics. I hope for a better 2023. Oh yes, and I’ve discovered taking Fexofenadine for hayfever makes a huge difference to the joint pains and swelling .So there must be something allergic happening.
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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 tested Covid clear but I am still very achey and not sleeping well due to pain. The MG is the least of it. Only 4 x 10 mgs of Mestinon daily.
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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 couldn’t compare notes. I have recently developed polymyalgia rheumatica and my mother had that, so the autoimmune streak is there. As a herbalist I had myasthenic patients and they often had other autoimmune illnesses in their families. Is there an environmental element? Toxic chemicals? The common diet eaten by family members to causing symptom triggering? There are many unanswered questions.
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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 at that time, so doctors were not very aware of MG in those days. I have recently …..after 4 Covid vaccines and a dose of ‘flu, got another autoimmune problem, polymyalgia rheumatica, which is a “pain” both practically and metaphorically! My mother had that one. Is autoimmunity pretty much a family problem?
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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 with nicotine sulphate. And I am very very careful around any herbicides or insecticides as they can contain neurotoxins.
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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 perfectly possible most days, and keeps me fairly fit. I suffer mostly when I have a cold or ‘flu.
I personally find I am sensitive to wheat, and always feel worse when I use it; oats and many other glutens are OK. I minimise dairy except for yoghurt which is a wonderful help when the Mestinon cramps overtake me. Even a cup of milk coffee can stop the cramps in their tracks if there is no yoghurt handy. Cramps are always worse if tablets are taken on an empty stomach.
I eat lots of fruit and vegetables, some brown rice and chicken and fish. I try to minimise sugar, and drink a small glass of wine several times a week. Occasional red meat.
Supplements, I think are needed. The tablets increase the peristalsis so the food passes through our systems a bit too quickly…..I take fish oil, vitamin D, Co Q10 (for artery and vein support and energy…I am 78), vitamin C and B intermittently if I am tired or not functioning too well. I also use astragalus, a herb which I find balances me(except if ill with infection).
I see a chiropractor every month as my muscles don’t always hold the bones in place and I have a good wholistic GP who always listens and we work together on any problems.
I feel very blessed.
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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 know.
After a severe virus(probably 1983), which many people suffered at that time,…stiff neck,muscle pain, headaches, bowel problems, food intolerances, weakness, mental fog and exhaustion, I developed chronic fatigue which lasted nearly ten years. Alternative therapies finally helped and I studied herbal medicine to help myself and others.
Mostly now I am well(78 ), but intermittently suffer the same symptoms which often involve craving sweets at the outset, then headaches etc. As with every infection, the MG worsens a bit. Interesting to think the polio might be relevant. Thanks for raising that.
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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 had severe MG from 1962,and am now 77. Thymectomy at 20 years of age helped a lot ,as did homoeopathy and herbal medicine later. I became a massage therapist and herbal med practitioner at 56 years of age. Now take 20mgs daily of Mestinon. I am very lucky, but have worked at it. I swim and walk a lot and don’t eat wheat.
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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 he did not want to go out for a celebration saying “I don’t want to contemplate another 25 years like the last 25”. I was shattered at that point, felt terribly guilty, angry and sad. I left the marriage the next year to allow him his freedom. It really did not make him happy, so perhaps it was not all down to me. MG is such a puzzling and variable disease. It will be bewildering for your wife. I found only my late mother, my aunt and one other girlfriend had any cognisance of my difficulties, and maybe only a couple of doctors. We are lucky to have this website to have the occasional debrief! Take care. WE understand.
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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
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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 helped me was a Bach Flower Remedy called Centaury taken with Rescue remedy. I am in Australia and Bach Flowers are readily available here. Also meditation and massage. I became a natural therapist in my mid fifties to help myself and others so this might sound a bit out of “left field”. My sympathy and the best of luck.
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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, anaesthetics, antibiotics”. I always feel quite safe knowing that if I couldn’t communicate, my medical story can be instantly obtained. I’m sure there will be similar systems available for you to use in Britain. Keep cool when you get to Oz. The heat at Christmas can be draining. Bon Voyage!   PS  Keep away from anti malarial medications and bitter lemon and tonic water as they contain quinine and will weaken you quickly.